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Update 2-28-10
It is with great sadness that I have to tell you all that have followed
Bryson’s Blog
http://www.bryson-blog.blogspot.com/ for the last three plus years, that
Bryson has gained his Angel Wings. He was an angel sent to this earth, to
this family to teach us about unconditional, complete and fulfilling love.
He did all that by just being Bryson. He passed away on Wednesday afternoon
at 3:23 p.m. on February 24th, 2010.
His mommy, Dana, the one who put so much of her life and love to care for
Bryson was by his side. He went bravely, he went peacefully with no pain as
he enters into the next realm. There will be no more pain from this earth or
from his fragile body. He taught me so much in his short 3 years, 8 months
and 15 days. He taught me how to never take anything in life for granted.
Every day is precious. Every day should be lived with the strength of will
and perseverance that he showed to us. We should all be so brave.
He taught us all what it is to love someone without rules, without
boundaries, without conditions. He drew us all closer as a family. Bryson's
memory will be preserved with our memories of loving him. To those doctors,
nurses, case workers who all could see something extraordinary in Bryson by
giving him the best and appropriate care, we thank you from the bottom of
our hearts.
Thank you for not seeing a disability or diagnosis, for seeing a little
child with special needs in a special place in our hearts. Please learn from
Bryson, that just because a textbook says one thing that as an human being,
we chart our own paths, we do as our will tells us to do.
It was Bryson's will to stay with us long enough to complete his
objectives, to teach what the human condition of love really is all about.
Grandma to an Angel-Bryson Nault June 9, 2006 to February 24, 2010
Update
4-20-08
Back in February, he had his cleft palate surgery and it all
healed and eating voraciously! He loves to eat and hums “mmmm” the entire time.
Bryson is healthy now after a worrisome bout with flu-like symptoms. He did lose
some weight but has since regained 2 pounds. There are no surgeries needed or
scheduled at the moment as he seems to be doing just fine. There are a couple of
things we are waiting to see how things develop before any course of action is
taken.
Bryson and his Mommy, Dana came to South Carolina for a visit with Grandma and
Grandpa. He is getting to be a well travelled boy! It was wonderful having them
here for two weeks as there are many things happening in the Charleston, SC area
during spring. In June he will be 2 years old but seems to be going through the
“Terrible Twos” early. When he wants his way, he’ll not stop fussing until you
see his way of thinking. It’s not always fussing though, it is just wonderful to
hear him giggle especially when he is the sunlight because of his low vision
issues; he can see bright light. We just love Bryson and every time we see him,
he has changed so much.
Doretta McHugh
Grandmother to Bryson
- - - -
Update 12-29-07
 Bryson
is now an excitedly wildly happily energetic 18 mnth old boy!! We are
looking forward to another momentous year in San Antonio. This last year,
the Naults have been through many tough times, but we all survived
victoriously. The year ahead, well, there's no telling what to expect... but
we'll stick it out, no matter how many dr visits, surgeries, scares, and
strange situations we get faced with.
BEAN celebrated his 2nd un-birthday on the 9th of
December. He is learning to eat and having a blast finding new ways to get
messy. He was grabbing handfuls of cake and delightfully artistically
decorating everything within a two foot radius!!!
He's learning to do a 5-point bear crawl, sit up right
(just for few seconds), chew toddler food, drink with a sippy cup, pet our
puppy, and say momma once in a while. He is so amazing, and it's such a gift
to be a witness to his strength, his quirky personality, and hear his
adorable little giggles and hearty laughs when dad plays with him. We are
still in debate about his vision issues, but we are damn sure he sees light.
When he gets in the sunshine he lights up this 100watt
smile like God himself was tickling his chin. We as parents can finally feel
that he does have a grasp on his place in this world and the best quality of
life that a boy like him could ever have.
It is our prayer that in the year to follow, we can
further his capabilities, his development and his joy of life, by expanding
on what Bryson was blessed with.
Dana & Travis Nault
allura_habibi@hotmail.com
Update: 9-28-07
Bryson is almost 16 months old now and is doing amazingly
well! On September 19th, he had surgery to repair his cleft lip (see photos
below). The Doctors at Wilford Hall at Lackland A.F.B in San Antonio, TX
performed the lip repair and did a wonderful job. While he may look like a
different child, the feisty little boy still dwells within.
Also while he was under anesthesia, his Opthamologist
performed an ultrasound on his eyes to determine if there may be a way to help
him gain more vision. The ENT performed an ABR to test his hearing and have
found that his hearing is nearly perfect.
Bryson continues to progress and will be crawling any day now. He loves to eat,
play and wiggle. He is very strong willed and a very determined little boy.
I want to thank you for providing this website as a community gathering to help
provide information exchange and hope to families of children effected by
Trisomy 13.
My thoughts and prayers go out to the parents and children as
they continue on their unique journey with these special angels.
Sincerely,
Doretta McHugh
Grandma to Bryson Nault - Full T13
dori_m@hotmail.com
 
before and after surgery
- - - -
Update: July 16, 2007
Bryson celebrated his first birthday on June 9th. In
attendance were family from all corners of the US and friends. We celebrated
this milestone with a barbeque and way too much food!
He is doing well and this week is scheduled for his first
surgery to place tubes in his ears and to cut the Lingual Frenulum. (where he is
tongue tied)
Please keep him and his family in your thoughts and prayers
as he has had a head cold and needs to get real healthy before the surgery.
Doretta McHugh, Bryson's Grandmother
dori_m@hotmail.com
- - -
Pictures of Bryson Nault, now 10 months old.
The Nault family has received a compassionate reassignment from the Army to San
Antonio, TX for Bryson's medical needs. The family was having to travel 75 miles
one way in New York to see any of his specialists.
Bryson's new pediatrician is the parent of another Trisomy 13
child on this website. Who could know or understand Patau's Syndrome better than
a parent of a child diagnosed with it.
Bryson to this date has not had any surgeries or
interventions. We are beginning to look into future surgeries, but want to make
sure his health is not compromised.
Submitted by Grandma
 Update:
11-26-066
Here is an update on my Grandson Bryson Elliot Allen Nault, born June 9th, 2006.
Bryson and his Mommy and Daddy moved from Charleston, SC to Fort Drum, NY where
Daddy is stationed in the US Army. Bryson has been doing very well. He is now 5
months, 3 weeks old and weighs just under 13 pounds. He is bottle fed and no
longer is fed by GI tube. He has begun to try some pureed foods as well. He is a
feisty little character and has his good days and not so good days. There have
been no surgeries to date. His Doctors want to wait until he is a little older
before they perform any surgeries. He does have apnea episodes from time to
time. In September, he began to have myoclonic seizures and is now on medication
to control them. He is being seen by specialists in Syracuse, NY that have a lot
of experience with Trisomy 13 and 18 children. Thanks to those Doctors, nurses,
technicians, speech and physical therapists, social workers and volunteers from
the community involved in Bryson's care and treatment so that he can grow and
develop to the best of his potential.
I think back to those first precarious days after Bryson's birth and remember
the hope you imparted to me, to not give up hope, to fight for the best chance
for this little guy and to pray for miracles. I'm here to let everyone know we
have great hope for this little guy, I pray daily for miracles and everyday is
wonderful gift.
Sincerely,
Doretta McHugh
Grandmother to Bryson Nault - Full T13
dori_m@hotmail.com
- - -
 My name is Doretta McHugh. I am
a first time grandmother to Bryson Elliot Allen Nault. He was born on June
9th, 2006 in Charleston, South Carolina. He was diagnosed 3 days after his
birth with Full Trisomy 13. He has what the doctors describe as a
"textbook" case. He has Scalp Defects; Cleft lip and Cleft Palate; microphthalmia, what appears to be a cataract on his right eye and coloboma
in the left eye; Micrognathia; underdeveloped lungs; ASD; umbilical hernia;
Cysts on his Kidneys and on his Spleen; one undecended testes and
microphallus; Polydactyly on both hands and on his right foot; hemangioma on
the back of his neck. What he does not seem to have are the following: Low
birth weight, as he was born full term at 9 pounds, 3 ounces! Nor does he
have microencephaly and he hears quite well.
He is 2 weeks old today and doing very well. After the initial shock and
doctors telling his parents Dana (my daughter) and Travis that there was
nothing they could do for him to take him home and give him love and
comfort. At 6 days old, that's exactly what we have did with Hospice Care
on call. The doctors suggested a DNR order which is so tragic for an
infant. The only extraordinary care we have had to give him so far, is to
feed him through an oral GI tube.
We have found that if we get the feedings
ready prior to his waking hungry, we won't have a "five alarm fire" on our
hands. Once he starts crying, it's hard to get him to stop and the feeding
tube doesn't work so well when his little stomach is clenched up. He is a
really sweet baby! He has begun to try opening his eyes all he can. He
plays and coos and is generally a happy baby.
Submitted by Grandma - Doretta McHugh
dori_m@hotmail.com
Grandma
Dori's Blog
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Translation
San Antonio, Texas
(TX) - Full Trisomy 13
