Daniel T.
Oklahoma
Birth Date - June 26, 2006
Main Diagnosis - Prader-Willi Syndrome
Daniel's Story
We welcomed Daniel into our home in April 2007 as a therapeutic foster child and adopted him in February 2010. He is a very loving and happy little boy. He's never met a stranger and always has a hug for anyone that will take one. His favorite hobbies are flirting with girls, playing super heroes and pretend play.
Daniel faces many challenges everyday. At the age of four Daniel weighed 85 lbs. and had many behavioral problems. He would be sent home from school at least 3 times a week due to behavioral issues. His behavior at home was also a constant challenge for us. His anxiety was so extreme, unlike anything I had any experience with. He was constantly hungry and would beg for food. He would wake up several times at night and begging me "Mommy I'm so hungry. Please can I have something to eat?" There were many mornings we would find that he had gotten up during the night and got into some food. He also suffered from low muscle tone and couldn't walk across a room without losing his breath. He wasn't able to run and play with his peers. With all the behavioral issues and the constant hunger we expressed our concerns to his pediatrician. He referred us to an endocrinologist. After blood tests and genetic testing it was confirmed he had Prader-Willi syndrome. I was very overwhelmed but thankful to finally have a diagnosis, He was started on growth hormone therapy and takes a shot every night before bed.
Daniel cannot be left alone around food so he has to be constantly watched. He is very manipulative and can convince many people to give him food. We are constantly educating anyone that works with Daniel and even his playmates about Prader-Willi Syndrome. It is very hard for people to understand the danger of this syndrome. A person with PWS can easily eat themselves to death.
In 2011 Dainel was diagnosed with Adrenal Insufficiency. This is when his body doesn't produce enough cortisol. He takes oral medicine twice daily and has "stress" doses as needed. I also carry a shot to have on hand for extreme stress. That is given to him to avoid adrenal failure. Stress can be from overheating, illness, or even just over stimulation.
Daniel now weighs 92 lbs and is wearing the same size he wore when he was five. He runs, climbs, and swims so much better now. He can ride his bike all around the neighborhood and now loves playing outside. He still struggles with some physical limitations and many behavioral problems, but I remind him that each day is a new day and we get to start fresh again. He is my hero and I feel I have been truly blessed to have the opportunity of being his mother.
Squares stitched by
"Cross Stitch Addicts"
Quilted by Tina Rose
I would like to extend a heartfelt thank you to everyone that put so much love and time into Daniel's superhero quilt. Words cannot describe how touched I am for him to have the opportunity to receive such a beautiful gift. He absolutely adores his quilt and takes it everywhere with him. He tells everyone about all the wonderful ladies that stitched each stitch with love for him to have this "love" quilt. He was also very excited that it matched his favorite backpack from school. God bless everyone of you for the love you have for what you do.
