It seems we only hear of the problems that come with a child having Trisomy 13.
There is so much more to these sweet lives. Each day the living children bring
joy to their families as they accomplish simple tasks or reach a milestone.
These moments are always a cause for Celebration! We'd love to share the
"reality" of Living with a child diagnosed Trisomy 13.
Click
here to send us your good news!
6-3-08
Lynne is 49 years old. She is the oldest living person
with partial trisomy 13. She is a long term survivor.
6-3-08
Taylor is now 15 years old.
4-8-08
 Tenecia
celebrated her 26th birthday on March 6.
4-6-08
Just wanted to thank everyone for praying for Samuel. He still is not 100% but
feels much much better. He was able to go to school a couple of days last week.
Of course he has an excellent school nurse (me) who's office is just 2 doors
down from his classroom, so I wasn't too worried about him returning to school!!
I also wanted to share an accomplishment. Samuel gets his total nutrition from Pediasure, which he drinks from a sippy cup. He does this independently--he will
turn the cup right side up if we give it to him upside down and he will turn it
around until the spout is on the correct side. Recently he has been unscrewing
the top and taking it off and getting the last drop out of the cup, but that is
messy sometimes, so we screw the top on very very tightly now.
Anyway....when he gets through with his cup, he just throws it to the floor. We
have been working and working with him to give the cup to one of us when he is
finished. I am excited to report that he is consistently doing that now...he
will stretch his arm out with the cup in it and hand it to us. If he leaves his
cup in his room, we send Roeber (his skilled companion dog) to get it and Roeber
will bring it to me or Tim, but the other day, Samuel was between Tim and Roeber
and took it from his dog and then turned and handed his cup to his daddy!! I
about cried...ok I did cry and I think daddy did too. That was HUGE!! Also last
week my mom picked him up from school one day and brought him home because I had
a meeting. She gave him a cup while riding in the car. When she got to my house,
she looked for his cup in the floor of the car..she said she was crawling around
looking under all the seats and could not find it anywhere, then she saw
it...Sam had put it in the cup holder!! thanks again for all the prayers
Anne
3-2-08
Hi Everybody, Kimmie participated in The Special
Olympics here in Naples FL. Kimmie was entered in 2 events, the 1st was the
tennis ball throw where she placed 2nd and she also did the 25 meter walk where
she placed FIRST!!! We are so very proud of our girl. Cindy & Tommy Miller very
proud parents of Kimmie T-13 20 years old.
1-25-08
Michael’s heart surgery went very well. He did not
spend very long in the hospital! He is doing wonderful and the doctor said that
his heart is working the way it should be! Praise God! Brandy
10-2-07
Melanie is now able to pull herself up and stand. That
is a huge accomplishment!! Raul Gutierrez
9-7-07
Kayla
turned 16 today!!! and has had a really good day, she is not having many
seizures lately and not having any other medical problems.
We are having her little party Sunday but she enjoyed a Birthday cupcake and ice
cream and she loved it!!
Rebecca can now change out her VCR tapes, really she just started doing this
today.
Also she is doing better at school, I think that she has decided that she likes
her teacher and is becoming very attached to her. So I am so thankful for that.
Also she has mastered a counting cookie jar that you have to put a little
plastic cookie in the jar and it will talk to you. I guess this goes together
with her finally putting her tapes in the VCR.
I am so glad that she is able to have some independence and some confidence.
Cindy
8-1-07
Rebecca's
21st birthday is approaching!
The big day is August 3rd. Rebecca is excited, and so are we. We already took
her to see the movie Ratatouille and out to eat, because she and I are traveling
out-of-town in a couple of days to another family wedding (the third scheduled
for this summer). We thank God for Rebecca and the blessing that she is to our
family and friends!
Glenda Parkman, Wife to Mike (my sweetheart), Mom to Rebecca (13q/15q
translocation, almost 21-years-old) and Aaron (18-years-old and preparing to
enter GA
TECH), and "Grandma" to Toby (our pup)
5-30-07
We have worked so hard on any type of communication with
Mitchell; PECS, Sign, and verbal. He catches onto signs but it takes awhile
for him to catch on. Lately he has been signing a lot better and overall
communicating like a superstar! Last night my husband, myself and Mitchell were
just sitting around. I told Mitchell that it was time for bed pretty soon and of
course he shook his head "no". Then out of the blue without prompting he looked
at me and signed "book"-this is a sign that he uses very well but it is what
came after it that dropped our jaws. I said-"yes we'll go read some books and
then we'll go to bed". Mitchell then signed, "book-dad" Paul and I usually take
turns reading books to Mitchell before bed and evidently he wanted Dad last
night. We were so proud of him...even though I felt a little left out, I know
dad felt very proud!
Katie - Mom to Mitchell t13 mosaic
5-22-07
Hi again everyone. I have forgotten to tell you about a milestone moment for
Rebecca I have been working on different signs with her and about 4 days ago she
actually started signing book. She loves for me to read certain books to her,
she changes favorite books about every 2-3 weeks or so and she will bring me
this book to read over and over sometimes I read the same book 15 times is a
row. anyway i always ask her "Do you want mama to read more book" and I sign
mama, read, more, and book. and I take her hands and do the signs too. which she
loves and laughs every time I do it. Anyway she finally started doing book and
at the right time too.!!!!!!!!!!!
So I think that this milestone might just put her up into the class that is a
little more advanced and if it does then she can go to the school that is 1 mile
away from home!!!!!!! Much better than almost 20 minutes away!!! Anyway that is
my little milestone story now if only we can get potty training!!! Ha! Cindy mom
to Kayla and Rebecca both partial t13
5-21-07
Dear All,
I just wanted to send a note regarding what the rest of this day holds.
Rebecca's special needs school has
had a middle/high school class for the past few years, and Rebecca is to be the
first graduate from their high school program into their adult training program.
(The first members of the adult program came in from other schools/programs.)
The school is having a graduation ceremony for Rebecca tonight, complete with
cap, gown, and stole. The cap and gown are red, and the stole is black. They
also had a Baccalaureate service yesterday, and she walked down the aisle to the
song, "I Believe the Children Are the Future." This represents, not the
culmination of working with her (because we'll continue, by God's grace helping
her to "be all that she can be") but an opportunity to reflect upon, and to
celebrate, how very far Rebecca has come in her almost 21 years of life. I'm so
thankful to God for all that He has done in and through Rebecca's life! I am
also extremely proud of and for her!
Glenda Parkman
Wife to Mike (my sweetheart), Mom to Rebecca (13q/15q translocation,
20-years-old) and Aaron (18-years-old and graduating from high school with
honors on May 25th, Lord willing) and "Grandma" to Toby (our pup)
5-4-07
Hi Everyone :o)
Devon has a new skill :o) We’ve been doing the hand
over hand routine for Devon’s bathroom routine for a long time. Although he
cannot unbutton his pants and pull his zipper down, he CAN pull his pants down
and sit down and scootchie back on the seat AND get back up by himself. He
attempts to pull them back up…but it’s a lot harder for him. Along with his new
teacher and myself…we also do hand over hand and make him flush the toilet and
wash his hands. Yesterday he got up and reached for the flush handle by himself
and he looked at me to see if I was watching and I told him to go ahead and
flush it. HE DID IT!!! Of course he was so excited and proud of himself that he
went back in the bathroom a couple minutes later and flushed it again…huge grin
on his face :o) And well…a couple minutes after that (after I’d gone back to
doing something in the kitchen)…he went back in and flushed it again and stood
there clapping his hands and grinning :o) At this point I had to tell him to
stop…that he only gets to flush the toilet when he does something in it :o) But
hey…we’ll take it :o)
5-1-07
Well my Macy Mae is doing really good since her visit to hospital with
pneumonia. She so funny with her cheekiness. Well just 17 days to her first
birthday and I couldn't be more proud of her. Katrina Mum to
Macy Baker Full t13
4-26-07
I should take this opportunity to mention that since Devon
has switched classrooms and teacher/paras… he’s doing better and his behavior at
school is better. He is listening to his teacher much better Mr. Johnson just
has to use a firm voice when telling him to do something. And our “behavior
improvement plan” is helping too bother here and at school ~Penny
Zion pretty much over his sickness. Thanks to all of
you great friends out there who sent up a prayer on his/our behalf. He is back
to tolerating regular feedings, his fever is gone and we are trying to get him
off the oxygen, but that is taking a while. He still cannot breathe well without
it, but he will get there. It will just take time. ~Kristie
4-25-07
Today while waiting in the Doctors office, Natalia
kept walking with her walker to the water fountain. She maneuvered the turns
beautifully. She's getting very good at walking, turning and backing up her
reverse K walker. Although G-tube fed, she really enjoys the water fountain,
sticking her tongue out to feel the cool water on her tongue and to slurp a sip
of water. She smiles, leans forward to try again and again and again! And even
does a little jumping dance when she knows she's found the water fountain yet
again. I think we made about 5 trips to watering hole this visit.
Another fun thing she is doing. Many of you may have tried this with your
typical kids...You turn their palm face up so the under part of the forearm is
showing. and then you ever so slowly run your fingers up the arm from the wrist
to the elbow. Most people get a quick tickle.... well Natalia just loves this.
She knows when we place her palm up -- she knows what's coming....Once we touch
her arm...she gives the most heartwarming giggle, and today I noticed, after
I've done it a few times... I can just hold my hand there just about ready to
begin... and she anticipates what going to happen and begins giggling....it very
cute.
Oh, and sharing her giggles. She's been having her own "giggle parties." On any
given evening we'll be watching TV, Tonight is was American Idol...(What a great
show!!! Raising funds for the needy) Anyhow, she gets herself giggling and she
can have her own "giggle fest" for several minutes... Its quite a show as she
rolls side to side please with herself for something...Its very funny!
Eventually she's scooped up by a sibling saying "OH she's so cute" Oh how I wish
I could capture all these great moments...She is so delightful. These times I
cherish. ~ThereseAnn |
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)
Translation