Tony's Troop
I sit here and wonder if this is the right thing to do. My grandson Tony has a very rare condition called Tuberous Sclerosis Complex also known as TSC. Tony was born with this. Tony has many tumors in his brain. Lots and lots of them. Tony has suffered from seizures since he was 4 months old. Tony is nonverbal and can not tell us when he is in pain. Tony is now 5 years old. His brain surgeries started when he was just 1.5 years old. In his short life he has had over 17 brain surgeries and many procedures. Over half of them within the last 52 days. (As of this post). After spending so much time in the PICU and the trauma of the infection and multiple surgeries he now requires a G-tube. Tony ended up with meningitis from the surgeries. This has required many surgeries and proceders, including one to remove a piece of his skull. Tony became very ill and weak. He will have to relearn how to walk and eat all over again. The bone flap that was removed will require another surgery in the near future to replace. He currently is in a hospital in Boston, Ma. He has been there since before Halloween. He is going to need alot of support once he is home to get back to where he was. His sister is missing him so much. She has been a trooper through all of this. His older, loving, most beautiful sister has gone without Halloween , her birthday, Tony's birthday and Thanksgiving as a family due to this hospital stay. The number one wish from her to Santa is "To have my brother home." My wish is to be able to send them on a "Family Vacation" when this is all said and done. Also to relieve them of the burden of the cost of rehabilitation. He has become very weak with one complication after another. This beautiful family deserves family time. Between his Mom and Dad alternating nights at the hospital for so long now... His sister is wondering if other families have to go through this. " Why my brother?" is what she is asking. She has not had both her parents home together in almost 2 months. She is 7. How do we explain the "Why my brother?" if as adults we don't know the answer. He has a very long road ahead of him with all kinds of rehabilitation. I look at it as "At least he has a road to go down." So as I sit here and type... I hope that you can find it in your heart to help in anyway you can. THANK YOU IN ADVANCE...<3