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6-21-08 It is easy for us (medical students) while learning about the different diseases and their symptoms to focus just on that. I'm a first semester medical student. Today I just learned about the genetic makeup, "mistakes" and symptoms that cause Trisomy 13. I looked up the characteristics and wanted a picture that could convey them. This is how I landed on the website your website "living with Trisomy 13." Instead of characteristics I saw your beautiful smiles and will forever remember it in my medical career; that not only should we look for symptoms and try to understand the origin, but more importantly look at the person with the symptoms. You are definitely not a mistake in God's eyes, as you are surrounded by people who love you enough to share you with the world--touching a medical student and other people far away. To you and your family I extend my gratitude. God bless you. Moses |
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3-30-08 Thanks to this site we did not feel alone in our suffering when we learnt about our child's grave disease. Our baby girl lived for 66 days. You helped us to survive the hardest time of our life. Today we feel we belong to the "livingwithtrisomy13" community. Thank you. Margaret and Leszek, Poznan, Poland |
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3-13-08 Thinking of you all on this Trisomy 13 Awareness Day and hoping that the Ironman campaign draws lots of positive awareness to LWT13 and your mission! Sincerely, Monica Rafie |
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3-12-08 Good day all Its been a while since I sent anything to you as I was and still am grieving. I lost my daughter Thando on the 01/March/2006 and have spiral down since. To all of you who have lost your lovely angels I too can say I can Identify with the pain and to those who still have their little angels with the God has a purpose have faith, miracles happen every second you breath. I am here to pledge my support as well to any one who needs it even if it is from a stranger. It is also the start to my journey of healing since it has been a tough one for me and I only realize now that had I had your support as before I might have not been through as much as I did and I would have been to also hold some one's hand and say "It's ok embrace what comes life has much to offer our kids show us everyday they live". Kind regards Abraham Kobe abraham.kobe@standardbank.co.za |
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2-27-08 Just found out that my daughter-in-law has a niece who is 5 months pregnant and was told her baby has Patau Syndrome. It appears she has been advised to terminate the pregnancy. I do not know any specific facts about the diagnosis but just want everyone to pray for Sara that she will trust the Lord and put her life and that of her unborn baby in His hands. |
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2-24-08 I came across your website while working on a lecture on trisomy for an undergraduate class that I teach. I was touched beyond words with your stories of strength, courage and love. I hope that my students can experience the same thing that I did. I am going to require that all of my premedical students visit the website and look at the details of at least one story. Thank you. James Engman, Ph.D. |
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2-15-08 This website has been a small source of comfort for my family. Anyone who reads this, prayer would be greatly appreciated for my cousin's son, Aiden, who was born 5 days ago with T13. Prognosis hasn't been good, but there is always prayer to fall back on, and if anyone knows this, it is the wonderful people who created this website. Thank you, and our prayers are certainly with the families on this website. Thank you, Brenna |
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1-1-08 I had a son with Trisomy 13 in September 1989. He was our first child and it was an unplanned pregnancy even though I was 32 years old. At our 18 week ultrasound I was given the all clear and was told I was having a boy. It was unusual to be told the sex back then, but I knew the Radiologist, as I was a Radiographer. I then had to have a 32 week ultrasound to check the position of the placenta as it was close to the Os. It was then that enlarged kidneys were detected and a lack of amniotic fluid and I was told his prognosis was poor. His condition was misdiagnosed as Infantile Polycystic Kidney Disease and over the next 4 weeks I had 3 more ultrasounds. However at 38 weeks he stopped moving and I knew that he had died. He was stillborn on September 11th 1989 weighing 6lb 7 oz and we named him Thomas, actually we named him that at 18 weeks. Two months after he was born we got the results of the autopsy which revealed he had Trisomy13. We had never heard of it. I will always be grateful that I was never put in the position of choosing a termination and that he died naturally. He changed my whole life and I realized how precious we all are. Psalm 139:13. For a long time after he died I found it very hard but we went on to have a daughter the next year who is 17 now and is a real blessing. My only regret was not having some time with him alive, not that I had him. Thanks Angela Whittle, South Australia. |
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1-2-08 I would like to say this website has truly blessed me, the stories are incredible... My friends just gave birth to a beautiful baby girl on12/26/07...Kayleigh Ann. She lived for 21 hours and 45 minutes but during that time she filled all of us with love. My friends new from ~16 weeks on that Kayleigh had Trisomy 13 they courageously faced the pregnancy and her birth and were blessed to have her for the length of time they had. They were told her heart probably wouldn't last after delivery but they (we) had her almost two days. I know that for them and the other parents that go through this they are God's chosen people. I myself have had 4 miscarriages and the reasons are unknown I do have 3 girls that are healthy and for that am thankful , but I would like to praise all of you who have chosen to give these precious children life!!!! Natalie Oliver, Clinton NC |
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12-15-07 My husband and I recently adopted a baby girl whom we named Kylah. She was diagnosed with full T13 after she was born. The doctors gave us such a dealth sentence (1 month), we almost changed our minds about the adoption. Thank God we didn't!!! Today Kylah is 5 months and is doing pretty well. She has no serious problems as of yet. Her doctors have been pretty blown away (their words) with her progress. She has been such a blessing to us and we are so glad we brought her HOME! Alicia Johnson, Memphis,TN. |
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12-14-07 Thank you for your wonderful website that not only encourages hope and prayerful intervention but provides practical support for these special children and their families. Blessings and thank you for allowing God to miraculously take devastating circumstances and work them together for good. Jan |
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11-7-07 Hello, I wanted to contact you to find encouragement for our wonderful friends who just gave birth to a beautiful baby boy last week on 10/30/07. His name is Ian Daniel and he has full Trisomy13. They are with him at Sacred Heart Medical Center in Spokane Washington. He is not on any life support machines but has a feeding tube and seems to have some trouble with apnea/breathing/mucus. Please pray for Ian Daniel and his family. They are devout Christians and would appreciate your prayers. |
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10-25-07 Bless all of the little babies in this world, each is a special gift to us whether a part of our life for merely a minute or for years. Each gives us a special joy, each shares their special talents. May each of them be protected by angels, may each of them be given a chance to reach their potential. May health providers be reminded that all life has value, each life counts and all parents have the right to choose the chance for life for their child no matter what the diagnosis. The only one that knows what is to be is God, and he in his time reveals his plan to us even though we may not understand it at the time. S. Hutchinson, Iowa |
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10-25-07 I would like to add a prayer request for the victims of the fire's. Three families we know lost their homes two in Rancho Bernardo, and one in San Pasqual. The family in San Pasqual is expecting twins to be delivered c-section next week, and they lost everything. Its been a very heartbreaking week. Kaitlyn is doing well. Kim |
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10-25-07 Bless all of the little babies in this world, each is a special gift to us whether a part of our life for merely a minute or for years. Each gives us a special joy, each shares their special talents. May each of them be protected by angels, may each of them be given a chance to reach their potential. May health providers be reminded that all life has value, each life counts and all parents have the right to choose the chance for life for their child no matter what the diagnosis. The only one that knows what is to be is God, and he in his time reveals his plan to us even though we may not understand it at the time. S. Hutchinson, Iowa |
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10-13-07 I only learned of this birth defect and this website an hour ago from Evan Cotter’s father- Mark. I see such beauty in these precious babies and children. Evan is so beautiful I just want to hug him and squeeze him! How inspiring the stories are too. I will pass this site and the stories to our church for the prayer chain. If I may, respectfully- add my prayers: God bless each and every family, May each family rest in the palm of our Loving Father’s hand. May His grace and strength pour down onto each member of the family, every minute of the day. Father, keep your ever watchful eye on each little one, and guide the steps and hands of every caretaker they come in contact with. May your wisdom guide each technician, nurse, practitioner, physician they may come in touch with. Lord Father Protector, your loving touch is all we need, may your healing love fill every cell and every fiber of each of these wonderful children. Let your grace shine as a light to the rest of us; as their families face every day. Father give a calming peace – peace that passes all understanding -to those who’ve lost their children, let them know that you are very near to them. And please Lord, help those who are facing the birth of a child with any medical problem that they are not alone. We thank you always that you hear our prayers. In Jesus’ Beloved Name. Laura in Cutchogue |
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8-28-07 This is one of the most inspirational and moving website I have ever visited. I cried and cried and cried. I was about two months pregnant went into the Dr.’s office, did an ultra sound and was told that my baby was not alive. I had a miscarriage. Totally in shocked and confused. They did testing and after 3 weeks I was told that the baby had Trisomy 13 and was incompatible with life, so that’s the reason for the miscarriage. My husband found this site and suggested that I take a look. It has given me lots of insight. My heart goes out to those parents who have to make that decision. I believe God knows best and he make my decision for me for whatever reason. He only gives you what you can handle and for all those mothers who have kids with trisomy 13 you are indeed Angels caring and loving God’s children. I am still grieving for my lost child but I give you all of my strength and my prayers for you are dealing with so much more than I am. Even though I don’t know you personally I feel a connection. May God continue to give you the strength to care of your angels. S H |
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8-26-2007 I found your website after learning that my brother and his wife who had their first child this month delivered a beautiful Trisomy 13 baby girl on 8/17/2007. I sent them a link to your site to encourage them. I saw Savannah Joi for the first time yesterday and couldn't wait to get my hands on her and kiss her. The love I felt for her was incredible. Thank you for this site and for giving families hope and encouragement as they carry birth and raise their special children for how ever long God allows. Auntie to Savannah Joi |
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8-10-07 Two months ago today we welcomed our first grandchild into the world. Isaiah, diagnosed prenatally with Trisomy 13, stayed with us barely long enough to get acquainted and returned to God a little over two hours after he was born. Our son and daugher in law showed incredible courage, inspiration, and faith as they gave Isaiah life, and, the fullest life possible in the 136 minutes that he stayed with us. Our lives have been changed forever by this sweet little boy in unimaginable ways! G'ma to Isaiah |
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8-9-07 I appreciate this website. It brings sadness to my heart and somewhat joy as well. There maybe someone in my family with Trisomy 13. I pray for the parents that they can get through this. I know god does all things for a reason. I love this child and its not even here yet nor do we know if its a boy or a girl. Whatever the outlook maybe I know this child will be loved greatly. Thank you for the information and the stories. Its helps to know there are others out there. Aunt to this Beautiful Baby |
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8-3-07 Thank you for your website in giving another look at Trisomy 13. When I clicked on the photos, I was expecting to see horribly disfigured children, but they looked cute and happy! I know that this disability is the reason behind many late-term abortions. We need to get the word out: Trisomy 13 doesn't equal a lack of quality of life! God Bless, Suzanne website link  |
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7-10-07 I came across your site today and felt I should write some comments! I have learnt a lot from your site as my mum won't talk about Patau's Syndrome or any birth defect/abnormality/disability of any kind. It's understandable, I guess, I don't think she's ever got over the loss of her baby girl. She had me 11 and a half months later, so I think she just threw herself into looking after her new baby. My parents had a little girl she lived 12 hours, dying the same day she was born. She also didn’t have a properly formed digestive system along with the cleft palate, extra fingers, unformed bones etc. she also had spina bifida (again, can't remember if that is specific or not!). Basically, she didn’t stand a chance, and the doctor's could do nothing. The reason it was especially shocking, I feel, is that up until delivery my mum had had an entirely normal pregnancy and no-one thought there was anything wrong with the baby. From what I can gather from my cousin, who was a nurse in the hospital, the defects my sister was born with stopped everyone in their tracks as soon as she was born. no-one suspected a thing so my mum was unprepared. During her pregnancy with me, she was much more closely monitored. Like I said, she won't discuss it with me, and if I ever bring up something close to the topic (even childbirth) she gets very angry and will leave the room, or go silent. She can't deal with people with disabilities very well (my cousin now has to use a wheelchair due to chronic arthritis, and finds it very difficult to be around her when she is in her chair), which I think is linked but I'm not a doctor so I don’t know! I would love to have kids in the future, but I am nervous about having them. I realize that it is highly unlikely my kids will have anything wrong with them, but there is a history of other genetic defects on both sides of my family. I just hope one day I will be able to face my fears and they will come to nothing!! I am glad I came across your site as it is clear that the families of trisomy kids are full of hope and love. Hopefully I will have even a fraction of this which will help me if necessary. Hopefully I will have time to work on it though as I am only 19 and not planning kids yet! Thanks to your site I am now clued up on what it is. I will never be able to speak to my mum about this, and she would be so angry with me if she found out I had researched it. I hope I never have a need to share it with her! (Omit my name out of respect to my mum.) |
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We were blessed with birth of little Carter, that has been diagnosed with
Trisomy 13, May 17, 2007. I have sent this link to the family and I pray that it
will be the inspiration that I felt when I viewed it. I dearly appreciated your
presentation and the feeling that there is a special plan from God, for those
gifted with a child with so much to overcome. May God richly bless you. Our
Carter is a lovely little guy. We're all going to learn something beautiful!
Diana Marshall - Indiana 5-19-07 |
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I lost my daughter Donna just after birth almost 9 years ago, June 25 1998. If
only your site had been around when I learned of her trisomy 13. I was given no
information not even a leaflet other than her prognosis was nil. I was desperate
for information but could find nothing here in the UK. every book I looked at
either had no entry or just said the prognosis was that of death. I found only
one phone number but failed to make contact.. the person gave me the impression
that to carry on with carrying her to full term was wrong. Its so good to see a
site like this available to all throughout the world where questions can be
answered but most of all those who surf by (why looking for help) can see that
they are not alone. Judy 5-2-07 |
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I was looking through this website, and remembering my sister, Magen. She was
born November 10, 1982 with Trisomy 13. Like many of the other stories, my
parents were told to leave her at the hospital, as she would not live for more
than a few days and would be a "vegetable". How wrong they were! She was the
light of our family, and had so much life and energy. She was learning to walk
before passing away in Sept. 1987. So much for only thinking she would live such
a short time. I am so thankful that my parents were so strong and brought her
home- my life would not have been the same. Because of her, I work daily with
individuals with mental retardation and developmental disabilities, and truly
have a different perspective on life and my job. Thank you to all the other
families who have allowed people like me into your homes- it's truly a blessing!
-April 5-3-07 |
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I want to let you know how much this web site has meant to me and my family. My
son and his wife, who are listed on your Prenatal Diagnosis link are expecting
their son Nicholas Wyatt Usher in June. Your
site has been an inspiration to them as they deal with this diagnosis. As the
grandmother of Nicholas I thank you for all your prayers and for the support you
offer to all parents facing the birth of a Trisomy 13 child. I want to thank of
all you who have shared your stories. I'm sure you have no idea how many lives
you touch with your encouraging testimonies. Your amazing hope and faith gives
each one of us facing challenges something to aspire for. May God richly bless
each one of you and your precious children as you face the joys and trials
ahead. 4-25-07 |
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I personally want to thank you for such a wonderful web site. This has truly
been such a God Sent to our family and myself. What you have done is such a
blessing to the families around the world. Thank you so very much! God Bless!
Angie ~Aunt to Myla 4-18-07 |
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I am the mother of two girls, 4 months and 5 years of age. My husband and
I have always been committed to continue with the two pregnancies, no matter
what our babies might be diagnosed with. We do believe every life is a miracle,
so we just opened our hearts to the gifts. We congratulate all parents who have
given themselves such an opportunity. Holding a baby is holding a gift from
heaven, and each gift from heaven is special, just because it has been sent from
the above to us. It is life, above, all. For those who have opened their hearts,
our special thanks, our love, our respect. For those who are in doubt, give
angels an opportunity to touch your hearts. You will also be touched by them. I
myself have felt it, by reading these reports from families that are now truly
closer to heaven. Patricia Rodrigues Costa de Sá From Belo Horizonte, Minas
Gerais, Brazil
patriciarcosta@terra.com.br 3-17-07 |
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Thank you very much for your site. As a Labor and Delivery Nurse, I have
been frequenting it often for information. What I am interested in finding is
any resources or web sites for Nurses who have to deal with medical
terminations. I had my first delivery of a Trisomy 13 baby, through a medical
termination, and I am finding that I am really struggling with the situation. I wish people had access to your site prior to make the decision to terminate. Blood tests are accurate, however, Ultrasounds only show so much, and you'd be amazed how often they are wrong. As a L&D Nurse I thank all the families who carry their babies to term. You'd be amazed how every delivery touches the life of your nurse. Anonymous 3-12-07 |
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Two years ago my sister received a pre-natal diagnosis of Mosaic Trisomy 13.
From the moment she was given the news every piece of medical advice she
received was to terminate. I was unable to find anyone that she could speak to,
that could speak on behalf of her unborn baby who had no voice. Even Genetic
Councilors I contacted were unwilling to put her in touch with parents unless
she decided to proceed with the pregnancy. I wish I had found this website back
then. I grieve every day for that tiny baby, I feel I let her down when she
needed me most. What a beautiful gift it is to receive a special child and what
a wonder it is to see them thrive against the odds. I speak with experience of
special children. My son was born 6 years ago with Trisomy 21 – he shows us the
purest form of love – unconditional … Lynda 3-8-07 |
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I sit here, with today being the 4 year anniversary of my big brother's death.
His name was Robbie, he was a pioneer of sorts in Massachusetts. He was full Trisomy 13. He lived to the exact age of 29, dying on his birthday.
He truly was a miracle child. The doctor's had said that he wouldn't live a
month, then three months. He was always smiling and brought joy to all that knew
him. He is missed. I hope that his life could bring people hope, which is why I
chose to write to you. Sincerely, Danielle Marquis. 2-28-07 |
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There are no words to describe how thankful I am with this website. My nephew
Joseph Zavala was born on January 25, 2007 and is currently in the hospital
fighting for his life now. Thru this webpage I have had the privilege of getting
to know families that have experienced the same situation we are in now. I thank
each and everyone of them for sharing such a personal intimate moment of their
lives. On behalf of the Salazar-Zavala family I thank everyone. Lorena
Ramirez/Houston, Texas 2-21-07 |
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TO OUR FRIENDS THE DUGGAN FAMILY LAUREN ELIZABETH
AND GRANDPARENTS OF TRISOMY CHILDREN. BE THERE FOR THEM! MAY YOU NEVER KNOW THE
PAIN OF LOSING A GRANDCHILD OR HAVING A DAUGHTER OR SON WHO HAS. LOVE AND
RAINBOWS 'GRAND MOM GUNAGAN 2-6-07 |
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This is a beautiful, inspiring site. Yet at the
same time, I sit here in tears... 22 years ago, my baby sister was born with
Trisomy 13. She was blind, deaf, had a few deformities on the hand and ear, and
had to be fed thru a GI tube as well. The doctors said she wouldn't live thru
the day & they were going to keep her in the hospital. Weeks passed (same as
many stories on here)...Time went on and she kept living. She was a survivor! My
mother urged them to allow her to take my sister home, and they agreed even
though they didn't think she'd live more than another week or so. She proved
them wrong! My baby sister finally passed away at the age of 18 months. I was
only 3 then but can still remember her and the impact of her life and death on
our family. My heart goes out to everyone who's ever had a family member with
Trisomy 13, living or deceased. May the comfort & peace of the Most High surround you throughout the struggles. Jennifer 2-1-07 |
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Hi! When I came across this website I was seeking
more information because my daughter have Trisomy 13, and new symptoms keep
arriving. She's 17 months old now. I'm deeply touched. I'm seeking for some
type of support group especially one that focus on Trisomy 13 and wouldn’t
require some type of monthly payment. I nearly came into tears reading the
exact things I feel from the stories on the site. Everyone keeps telling me
they know how I feel or what my husband and I are going through. But as I can
see from here, these families know and they are going through this. I feel much
like everyone here, being told after so many times of the worst out comes and
being told to set up funeral's needs for the soon or long future. It's very hard
to hear everything so negative and keep a positive mind. She's here and still
thriving. I'm just so glad that there are some people out here that know what
we are going through and that we aren't alone. Thanks!! *hugs* PaNyia Vang,
Kansas City KS 1-29-07 |
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Hey! I’m a med student in the Uk and came across your website during my genetics studies. I'd just like to say that you offer a brilliant support network to those affected by trisomy 13, and i hope the website continues to help those in need of some guidance. Many thanks, James M 12-14-06 |
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What a beautiful site! In 2004, I was pregnant with our daughter Jillian Rose
who had trisomy 18. I was shocked at many doctors views of these precious
babies. We were told our daughter was "not compatible with life". She may not
have fit into their ideals, but she was loved and wanted. We were given the
blessing of Jillians life here on earth for 25 hours, the most precious hours of
our life. God Bless you all for the support you are giving families. Lisa
(Alisa) Krumnow alikrumn@earthlink.net
11-28-06 |
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This is the most moving website I have ever seen.
I came across it in the process of doing a biology project. I now know much
more about Trisomy 13. Thanks, and keep up your wonderful work. Daphne 11-15-06 |
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I just found your website while trying to figure
out what this condition is. My little sister Micah's (Vittetoe) baby
(Marshall--just born this morning) has been diagnosed with trisomy-13. Thank
you so much for your prayers and for the wonderful pictures you posted of your
little Natalia. They are so hopeful. Anyway, Marshall is being taken to Tulane
as I write. Thank you, Rebecca and James Fritschle Let us dwell in fair Ithilien and there make a garden 11-15-06 |
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Hi my name is Ruth and we had a baby with Trisomy 13 syndrome born in our family
in 1989. She was my brothers first child, Cheyene Dawn. She lived for 7 weeks
and she enlightened all of our lives. My brother worked hard up all night he was
a great dad always taking care of her. Feb. of 1989 she past away. Our prayers
are with all that endure and the children. 11-14-06 |
| I had a dear friend who
carried her baby, Dominick, to birth (he came early) in 1997 against the advice
of her medical caregivers. He had trisomy 13 and died during birth. I was and am
so proud of them, because they gave him every chance and have no regrets. I
still pray for them every time we have communion (once a month at our church),
as I know they still miss and think of their precious little boy. Thank you for
your beautiful site. I am teaching high school biology and am going to talk to
my students about Trisomy 13. Keep up the good work and encouragement that life
is precious and beautiful, in all its forms. God bless you. Andrea Wilcox 11-5-06 |
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bless the wonderful parents who love their children and spend so much extra time
taking care of them. You will be rewarded in heaven. Dan 11-1-06 |
| Hi, I am a midwife in the Northumberland - the most
northern maternity unit In England Uk I came across your site when searching
for information as I have just examined a newborn premature baby who has very
abnormal eyes, single palmar creases, a small head and a loud heart murmur.
Please may the Lord add my prayers to yours for these special children. I have
found the information on your site informative; enough to equip me with the
knowledge to support these lovely young parents through the stormy time ahead
awaiting test results. George Brooks, Supervisor of Midwives 10-25-06 |
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What a beautiful site! I love
the song and video of the kids :) My friend Adrienne told me to checkout Baby
Evan on this site (he is adorable, just as the
others). It is nice to know that this site is out there for families in need of
compassion, positive support, love and inspiration - but most of all true
understanding of what they are going through. Remember THERE IS ALWAYS A FIRST!
- so many changes have evolved in this world (Down Syndrome is a great example).
It is parents like you, who make these changes happen! Have faith and manifest
an outcome to the highest good of all concerned - take hold of your vision and
own it. Pray for guidance and God will show you the way. Follow your Mother's
instinct - it is never wrong. These angels are special and bring much love into
a world that is in such disarray. Peace & Love, Diane :) 10-12-06 |
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I just came across livingwithtrisomy13.org as I
was studying for my upcoming examination. Thanks so much for putting something
like that together- it's wonderful to know that so many families with trisomy 13
children are doing so well. I wasn't able to read every story, but enough of
them to learn the valuable lesson that there's always hope. Thanks for that.
Good luck with the site and all that you do. -Tracy Zundel, Second year Medical Student 10-11-06 |
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I am a physician who has had experience caring for
little ones with trisomy 13 and other devastating birth defects. I have also
had the immense privilege of caring for babies who died shortly after birth. I
want you to know that NOBODY should ever tell ANYBODY that there is no hope. It
is deplorable for a physician to breath such words. To say there is no hope is
to say there is no God. There is a God in heaven who actively performs
miracles. Whether or not the miracle we are looking for is the miracle that we
see is a separate issue. I believe that I
have never seen the glory of God and the beauty of humanity more than through
the lives of these babies and children and their parents. Of course you as
parents of these sweet peas know that. I encourage you to find a new physician
if you ever again encounter one telling you that there is no hope. That is
simply a lie. Blessings to you. ~ Elizabeth H. Tichy, MD
San Antonio, TX 9-20-06 |
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Please tell Maureen K. Higgins that her writing
titled "To You, My Sisters" (on the inspirations page)
so touched me that it took a while to stop crying. I've learned to use humor
and shrug off the pain, and her incredibly sincere writing put into eloquent,
moving words the very experiences I cannot convey to others. My child does not
have trisomy 13, she has tuberous sclerosis, but truly, all of us mothers are
indeed sisters. God bless you and keep you all. MaryJane Mudd Houston, TX 9-8-06 |
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This website is truly inspirational! I do not
have a child with this disorder, but a close friend of mine just lost her
daughter to it. I have fallen in love with many of these precious children.
May God Bless each of these children and all to come. They are all BEAUTIFUL!!
Cameron 7-23-06 |
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I think your website is terrific. I have a close friend who just gave birth to
a little boy who has been diagnosed with Trisomy 13. He had an omphalocele, a
heart defect, and problems with his lungs. he's in the NICU unit and they aren't
giving him much of a chance of survival. His name is Jonathan. Please pray for
him and his family. Thanks. 7-17-06 |
| Thank you for taking the
time to prepare and continuously update this site. Please pray for Kaci Hyatt
born Friday, July 7 at Community Hospital in Munster, IN. Kaci has been
diagnosed with Trisomy 13. She is my first grandchild. The stories included in
this site and the beautiful pictures have giving me the strength and hope that
God will allow us to experience all that Kaci can give us for years to come!
Sincerely, Kendall 7-11-06 |
| My husband and I just had Cale Robert on March 24th. We
were told at week 20 he had Trisomy 13. He was born on week 35 and we were
blessed to have him come into our life for 50 minutes before he went home to be
with the LORD. I expected him to be born healthy. I really believed he would be
okay. I am thankful for our neonatologist and nurse midwife. We both held our
son until he passed away. We have a 5 yr old, 4 yr old and 2 yr old. We are
trusting God and have peace in our lives and we are glad we gave Cale a chance
for life. He changed ours. Michelle 4/20/06 |
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Thank you so much for this site. My sister and brother in law had Carson
James on 4/12/06 at 32 weeks and just found out that he has Trisomy 13. Please
keep them and our family in your prayers. This site has given all of us some
hope. Love and hope to all of you. Shawn (Carson's Auntie) 4-14-06 |
| I want to thank you because your website Living with
Trisomy 13 is what gave my daughter Nicole the strength to fight the doctors to
give Alyssa the surgery for her trach. It showed her that there are other
children who are going thru the same type of stuff as Alyssa. We understand
that there is no way of knowing how long Alyssa will be with us but we are
cherishing every minute that we have with her. Lynn (Grandma to Alyssa) April 8, 2006 |
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I want to thank
www.livingwithtrisomy13.org for whom I've written my story, because in my
worse hour of desperation, you guys helped me with all of your stories and
pictures, to understand and plan for the best outcome I could for when my baby,
Jorge, was finally born and thanks to you,
that was possible and made the most magical 19 minutes of my life, possible.
Thank you. Tanya March 30, 2006 |
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I discovered this website in June when I found out
that my youngest Christian was diagnosed
with Trisomy 13. This site has been a major pillar of support for me in dealing
with the loss for Christian. He was a true blessing and my angel. He was with
us for 2 days but will be in our hearts and souls for the rest of our lives...
Thanks to all of the wonderful families who share their stories that help the
rest of us to be strong and have faith… So from me to all of you guys thanks.
Marianne Deaton February 24, 2006 |
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Hi ThereseAnn I'd like to thank you first of all for the wonderful site you have on Trisomy 13 children. I knew nothing of this disorder except the grim details our doctors told us. It was a great comfort for me to be able to read through the stories of Trisomy 13 children, like your beautiful Natalia, who are thriving. It gave us hope and helped us to enjoy every minute with our beautiful baby girl. Unfortunately, our little angel passed away this past weekend, but we had her for a lot longer than the doctors told us we would. Sincerely, Maria Demers February 15, 2006 |
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What a lovely website. I was researching a presentation I am writing on
screening for chromosomal abnormalities and was lucky enough to find your site.
Thank you. Denyse 19 Dec. 2005 |
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Being a medical school student studying in Seoul, South Korea, I happened to
visit your website while I was studying genetic diseases. First of all, I was
deeply moved looking at all of you making the lives of yourselves rich through
your treasures - your children. I have had, since young, hopes of initiating a foundation that supports the children and the pregnant who are genetically minorities. I wish someday, I meet fully grown up kids in this web-site in a more global community. Your endeavors brought into my mind a will to become a doctor of courage and with a warm heart. Rhee Kwangpok 이광복 22 Oct. 2005 |
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Hi Therese and all the families with trisomy 13 angels, those still here and
those who play together in heaven. This is a truly wonderful site and I am totally amazed at the pictures and videos. My little nephew [Jacob Haynes, pictured on this site] maybe far from me physically [across the big pond] but he is forever in my heart and one day will play with his little cousin, Amy. You all have made my day. Watching the videos [hint: come on Gary get one of Jacob on here] give me a very warm glow within. These very special angels give us so much and teach us more than we may understand. Jacob has taught me to really see each day that I live. Not just walk through it or get by, but really see it and feel it. Thank you Jacob for being who you are. I often here your giggles in my mind and they always make me smile. This site is beautiful, I have laughed and smiled with the pictures and videos and I have also cried with just the thought of the little ones leaving to go to heaven. I can not even begin to understand how anyone feels with the loss of a child, but my thoughts and blessings are with you all. All those who play together in heaven and all those still here. God bless you sweethearts. Sue xx 9-28-05 |
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Thank you for giving me somewhere to go and acknowledge the love that I have for
my daughter. I was thrown into this whirl-wind on Aug. 19th. The dx of t13,
knocks the wind out of you. On the 20th, I held her and loved on her for 15
glorious hours. She died on the 21st. in my arms. Lisa 9-28-05 |
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I am so glad to have stumbled across this site. My child has Holoprosencephaly.
I am truly amazed at how wonderfully these children are doing. It gives me so
much hope. The most wonderful thing that I observed from the videos is how much
the families just LOVE their children! So awesome! Sarena Pitts, Mobile,
Alabama, US (mom to Lily, 16 months) 9-23-05 |
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I'm so thankful I found your site. I recently lost my son born and passed July
1, 2005. He was with us for 16 wonderful hours. The genetic doctor told us he
had Trisomy 13. Veronica Oropeza, voropeza@powermate.com 8-30-05 |
| Thank you for such a wonderful site. I have nephew that was born eight days ago
today with full Trisomy 13. This little man has already blessed our family with
so much love and sweetness. While the road ahead is uncertain and our time with
him will be altogether too brief, we know that his life counts and that God has
a plan for him and for every one of us. You have an outstanding ministry here. A proud auntie 6-11-05 |
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I just wanted to let you know how useful this website is. I'm currently 5 month
pregnant, and with all the abnormalities from my sono we suspect trisomy 13. I
now realize I'm not alone. Every child here, living or not is a miracle. Vanessa 6-10-05 |
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I just would like to thank-you for this. I lost my little girl Lauren Mikaela
born May 6th 05 died May 12th 05 to Trisomy 13. Reading the messages on these
sites made me realize I am not alone in this. I have found plenty of sites
giving me information but this was the first I found giving support and the
realization that it happens to many and it was not just me. Regards Carla 6-7-05 |
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Thank you very much for setting up the website at Living With Trisomy 13. All
the stories are heart warming and I will continue to pray for all of you with
Trisomy 13 children who are miracles from God. Hugs from Ang Li Li, Malaysia 6-2-05 |
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Through the website you started, we have seen the beauty of these children, both
in themselves and in the eyes of their families. In a time when as a society we
strive for perfection, we have seen that God has created what initially appears
to be the least perfect, the most perfect. For isn't our ultimate purpose to
create love in the world? These babies bring more love about in even a short
life time that most people in a long one. Barbara Farlow 5-19-05 |
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I must thank you for having such a WONDERFUL site for the little ones. I rarely
ever get to talk about my little boy because others think that it bothers me to
talk about his situation when in reality I would love to share our story about
him whenever I could. Nancy 5-17-05 |
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Therese, A good friend of mine who lost her daughter to trisomy 13 told me about your website and I just have to say it is wonderful. I pray that God's blessings are upon all those who are diagnosed and their family members. I can only imagine how difficult is must be. I thank you for such a beautiful website that can help people learn about and understand the condition and help those who are suffering because of it. God bless you. Jenn S. 4/6/05 Maine |
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From: "BAKER JAMES"
jnlbaker2698@msn.com |
| Hello, I came across your web site and found it very encouraging after all that we had been told and researched in the previous days. Janina JaninaArritola@adelphia.net |
| Hello, I'm a student in NJ.. and I'm doing a project on Trisome 13. I think your story is amazing. God bless your family :-D |
| My name is Allen. I just found out that our unborn son had full Trisomy 13. This is a little hard to write and talk about still but it is getting easier. We have searched the net to find families with children who have survived past the statistics, I ran across your site and have been encouraged with your and Natalia's story. We have contacted SOFT and are planning on a lot of work with that organization. Could you please pray for my family, and I will add you and your family to mine. Well I am at work so I will get back to it. |
| I really enjoyed the picture. It brought back memories of holding Sierra inside of my hospital gown because she couldn't keep her body temperature up and the doctors said that would help. Life seemed so much simpler back then. Nicole |
| What a wonderful website, so full of hope. Julie |
| May God continue to bless you as you continue to bless others. Thank you for your beauty. Karen |
| What a lovely, touching site. You remain in our prayers . Kay |
| What a beautiful site, No words could express how impressed I am with your vision. You are a true example of God's beauty shining through you. "No eyes have seen, no ears have heard, no mind has conceived what God has prepared for those who love Him." l Cor. 2:9. |
| What a beautiful website! What a beautiful picture. Well done. :-) Rose |
| Therese, Your words give me comfort. Burr 2-11-05 |
| Samuel's Doctor say the site. He said he emailed it to many doctors and future doctors. He was so impressed with Samuel and promised to share the "other side of the story" with any family he may come in contact with in his practice. I couldn't imagine anything good coming out of Samuel's injury, but if it keeps a baby from being aborted because a doctor saw his quality of life, I will have to believe that God was using him by allowing this to happen. Anne |
| They think Malakai may have Trisomy 13 as well, just like your Natalia. We are trying to be positive, and your site just made me feel great to hear how a child can survive Trisomy 13! Trina |
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Dear ThereseAnn, WOW! I was touched, inspired, overawed, amazed. I think it is FANTASTIC! I'm so glad for all you've done. What a wonderful contribution to this world you've made! Lizzy |
Have a child living with Trisomy 13 syndrome
- a Patau syndrome survivor?
We
would love to add your child to our Album.
Click here to send us
their information.
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Living with Trisomy 13
Focused on prayerful support and gifts of love
to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA 92649
info@LivingWithTrisomy13.org
| Text and graphics © LivingWithTrisomy13.org 2005-2007 All information found on this site was submitted to us directly by the families and used on this site with their permission. | |
| Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission. | |
|
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
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*Disclaimer All material on this site reflects our personal journey with raising a Trisomy 13 child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition. |
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