Tommy was the 6th Sanfilippo child in the world to have a stem cell transplant and the only to have 3 transplants. Tommy was an angel on earth and now is an angel in Heaven. He has given so much hope to thousands of children in the world and did it with a smile on his adorable little face. He was always smiling and being silly and even though he was only 4 years old when he earned his angel wings, he lived a full and happy 4 years. Tommy loved life and still stops by to visit every now and then and continues to make us smile.
Favorite Hobbies:
Tommy loved to play ball, color, and ride the rides at the amusement parks. He loved Dora, Barney, and Teletubbies and of course Snoopy. I don't think there was anything that Tommy didn't love to do!
Proudest Accomplishment:
Tommy never said a word, but he used sign language and I was so proud of him. He was such a smart little guy and was even dressing himself, I am just so proud of him for everything that he has ever done.
MPS Heroes:
That would have to be Dr.Kurtzburg at Duke Medical Center. She was so wonderful with Tommy and his brother and sister (Hunter and Ciara). I even got a card in the mail a couple of days ago from her and she said that she is still trying to find something to help Ciara and Hunter. She has such a big heart and really cares about our children.
Words of Wisdom:
Don't stress over every little thing, just enjoy every moment you can with your child because you never know when it will be the last moment you have with them.
Personal Diagnosis Experience:
Tommy's sister, Ciara, was diagnosed when she was 4 years old, I was pregnant with Tommy at that time. About a year later we decided to get Tommy's brother, Hunter, tested for Sanfilippo also because he wasn't talking and they tested Tommy also, even though they were positive that he didn't have it. Because we changed insurances, it took almost a year for them to finally test the boys and in February 2002 we got the diagnosis, Hunter AND Tommy also had Sanfilippo, Tommy was 2 and Hunter was 3. It was the darkest day of our lives.
