Jack and theChive - Finding a Home
Who is Jack? Jack is a kid with a rare disease—a disease so rare that it took close to six years before we were given a diagnosis...before we even understood what was happening with Jack.
The disease is inflammatory. It goes after the nerves and it is extremely painful. Jack’s skin would erupt in a rash so bad it looked as if he had been burned. The skin would tighten and split open and then all of his skin would peel off multiple times. Then the neurological symptoms would kick in and he’d lose more and more hearing. Finally, he would lose the ability to walk and to use his hands with full strength. He did this twice a year for close to six years.
Because we didn’t know what was happening, we couldn’t stop the process and the disease eventually caused immense white matter damage to his brain. Jack must relearn to do everything—eat, speak, move. Three years after the devastating damage, he is still totally dependent on us for everything. He is slowly healing. The problem, however, is that he is still growing and by next year he will be a lot taller than me (his mom). 
We pay rent for a two-story home that has 15 steps that we must carry Jack up every night and bring him back down every morning. The downstairs does not have a tub. That is also upstairs. Having a single-story home would be a miracle. There would be less risk of Jack getting hurt, but it would also lower the risk of my husband or I getting hurt again. My husband has slipped a disc twice in his spine lifting Jack and I have strained tendons in my arms and have injured my back as well. 
We haven’t moved because we can’t afford to. We are down to one income. My husband works and I take care of Jack and his twin who is autistic. Jack is completely aware of what is going on around him/what has happened to him. Diapers upset him—so Goodnites it is. Having a disabled child is expensive, and it doesn’t stop at Goodnites. There are the wipes and the pads and the powders and the creams and everything else one needs to make sure that no infection sets in because he cannot use the bathroom on his own. He needs a lot of therapy to recover and that’s three days a week plus. Then he has doctor appointments and we go out of state for a lot of his treatment and that is a lot of gas. We have enough for those things.
Any donation is greatly appreciated. Jack has had a childhood full of pain and hospitals and frustration, but he is always smiling. He is the happiest child. His positive attitude helps us get through the rough patches. The past few years have been a nightmare and things have been so hard for so long—and then all of you came along and you are giving us hope. You are giving us a new start. You are giving Jack a place to live where he could get around the house in his wheelchair - where if he ever learned to walk again or got a wheelchair he could control, he would finally have independence. Nothing would stop him. No stairs…no bathroom without a bathtub…every single one of you is giving him a chance to have a space where his disability can’t stop him. 
One of the most important things to know about Jack is not only is he the happiest child, but he’s also one of the kindest. He always helped the special needs students get their jackets on and made sure they had everything they needed. He made sure no one left out his autistic twin who could not speak. And if another child had a bad day at therapy he would hug them and tell them they could do it. He was a friend to everyone. His laughter is infectious and he just finds joy in every single day!
That is who you are helping. You are helping a kid who has made me so proud because he is kind. Jack never let his disease define him. And if any kid can beat a disease—it’s going to be Jack. And that is because he not only has his family supporting him, but now he has all of you too!
All of your kindness and your donations are changing our lives. You are making a difference. And that matters. That means everything to us!
Thank you all so much,
The Sawyer Family
