Brian D.
New York
Birth Date - December 29, 2010

Main Diagnosis -   Ataxia-telangiectasia

THEME: SpongeBob, Ninja Turtles or Batman


Quilt Deadline: 1/15/16
Brian's Story

On December 29, 2010, our beautiful baby boy Brian came into
this world and I was instantly in love. For the next year, everything was bliss.
He was reaching every milestone right on time and he filled our family with joy.
We were complete.

When Brian began walking at 13 months, we noticed that he
was unsteady and he often held his arms above his head for stability and
balance. We talked about it and assumed, "it will come." He was still happy,
beautiful and full of energy. Brian started talking, but the speech was limited,
we thought "it's coming." The drooling wasn't slowing down, but we thought,
"he's still young."

Finally, we realized that our little buddy needed some
assistance. Early intervention told us that he didn't qualify for services, and
no delay was noted. We didn't agree, but trusted the professionals. He was still
happy, beautiful and full of energy.

When Brian turned two, he was still
unsteady, had limited speech and was still drooling. We realized that this
developmental delay was not improving and with much apprehension we started our
search for a specialist with an answer. Neurology guided us through the testing
process and we received a diagnosis of dystonia, a neurological movement
disorder that wouldn't ruin his life, just leave him more wobbly then most. We
were devastated, but Brian was still happy, he just lacked "typical" toddler
energy. We rolled with the punch, adjusted to life with this label and moved on
while Brian continued his therapies at school.

We decided to add a sibling to
our family and were thrilled to announce that we were pregnant with another
wonderful boy! We pursued genetic testing because we wanted to know if baby
Andrew could also have dystonia and if so, we could start his therapies earlier
than Brian did. Life moved on after the bloodwork and months later, Andrew
joined our family. Beautiful Brian became an amazing big brother and we couldn't
have been happier. We floated on cloud nine, filled with love and joy with a
perfect family of four.

On August 8, 2014 one phone call changed our lives
forever. What I thought was an insurance question from the genetics counselor
turned out to be news that took my breath away and brought me to my knees. My
beautiful, perfect, happy, brilliant baby boy had a rare progressive, recessive
genetic disorder called Ataxia-telangiectasia. My mind raced as I tried to
understand what the voice on the other end on the phone was saying. It seemed my
husband and I were part of the 1% of the population who were carriers of the ATM
gene and together, and we passed it on to our beautiful baby (AKA recessive).
Roughly 500 children in the United States have it (AKA rare).
Ataxia-telangiectasia is fatal and there is no cure.

This was the answer, the
answer we'd been hunting for. It wasn't just a delay we were dealing with, it
was the most awful disease I'd ever heard of. I sobbed harder then I've ever
sobbed before. My body ached with pain for my beautiful boy. I started reading
about A-T and the agony and heartache grew

"Imagine a disease that combines
the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis,
immune deficiencies, and cancer. Children with A-T are usually confined to
wheelchairs by age 10 and often do not survive their teens. Because A-T is a
multi-system disease, scientists believe that A-T research will help more
prevalent diseases such as Alzheimer's, Parkinson's, AIDS, and cancer." (The A-T
Children's Project)

This is our new reality. Our living nightmare. Our happy,
brilliant, beautiful boy who brings joy to everyone he encounters will slowly
begin to progress through this disease. It's a ticking time bomb. They tell me
he will lose his movement capabilities, his speech will slur, his immune system
and pulmonary function will be compromised, and he will be at higher risk to
develop leukemia/lymphoma. My poor sweet angel doesn't deserve this no child
does.

For now, we plan to make every moment count, to focus on the NOW. Right
now, Brian has no idea what lies ahead and we plan to keep it that way. Come
hell or high water, our boy is going to enjoy every second of this life. So
every day I wake up, we play with Thomas trains, we drive Hot Wheels cars, we
laugh, we snuggle, we watch Blues Clues, we enjoy the sunshine and each
other.

I'm so proud to be his Mama and I'm petrified of what lies ahead.
Every night when he is asleep, I let myself fall to pieces. It's pain like no
other and to be honest, I don't know how this pain could possibly ever go away.
By the time Brian wakes up in the morning, I've pulled myself together and he
has no signs that his mama has cried all night for him a helpless, frustrated
mess.


Mr. Krabs (Sponge Bob character), online, https://www.pinterest.com/pin/565131453219307444/

Below is a list of patterns already being stitched.
Please check this list for duplications before signing up.
Link to sign-up form at bottom of list
Accepting 20 sign-ups
******************

1. Fran  DC Super Heros / Batman /Pg 18
Full figure batman surrounded by bats

2. Jennifer  craftyguild.com/2014/spongebob-free-cross-stirch-pattern.html / Spongebob
  Spongebob
3. Sandra Designed by Friend/ Spongebob
Spongebob wearing cowboy hat
4. Nezzy Designed by Friend/ Spongebob & Mr. Crabs
Spongebob & Mr. Crabs
5. Joyce https://www.etsy.com/shop/weelittlestitches / Pixel People - Teenage Mutant Ninja Turtles
All 4 ninjas with "Cowabunga Dude" at the bottom
6. Gail Facebook.com/PatronesBeads / Donatello
Donatello with his staff/rod
7. Sandra  Mr. Krabs (Sponge Bob character), online, https://www.pinterest.com/pin/565131453219307444/
8. Jean Teenage Mutant Ninja Turtle pamphlet - 1990 Mirage Studios / Cowabunga! / pg. 1
All 4 turtles, looking like they are busting through the cloth, brandishing their swords
9. Tracey from internet / Baby ninja turtles
Ninja turtles when they were toddlers all 4 of them
10. Mary Ann Sponge Bob & Patrick
Sponge Bob & Patrick with arms around shoulders
11. Sandy  www.pinterest.com/pin380624605980655347
/ Batman
  Full body of batman running
12. Sandy S The Adventures of Batman & Robin by LA / Batman Face /Pg 3
  Just the face of Batman
13. Pat Teenage Mutant Ninja Turtles / Raphael /Pg 01
Rapael
14. Lisa   keep calm and call batman
  words in black with bat logo and blue and black border
15. Julia www.grillestricot.be/page134.html / Teenage Ninja Mutent Turtles /Pg 2
  All 4 of the TNMT together
16. Carol Stoney Creek pamphlet Leonardo and Cowabunga / Leonardo /Pg 4
Leonardo with arms behind back
17. Charity The Adventures of Batman and Robin /  Batman /Pg  11
Batman standing
18. Sheli https://www.artfire.com/ext/shop/product_view/allstitches/3552961/all_stitches_-_vintage_clown_moinkey_completed_cross_stitch_-027a/handmade/needlecraft/cross_stitch/other
/  batman
batman standing with his arms crossed
19. Julie StitchBucket on Etsy/Teenage Mutant Ninja Turtles Cross Stitch Pattern
https://www.etsy.com/ca/listing/168288720/teenage-mutant-ninja-turtles-cross?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=ninja turtle cross stitch pattern&ref=sr_gallery_2
Pattern with 4 ninja turtles. I will stitch Raphael
20. Susie grillestricot.be / SpongeBob jumping
SpongeBob smiling and jumping with arms out
21. Jeanne DC Comics Super Heros / Robin and Batman /Pg 17
seated Robin, standing batman with cape extended


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