Back in September, I blogged about a very special little boy that I work with in Kindergarten named Gavin.( http://www.adventuresinteaching.net/2012/09/mito-week-and-amazing-little-boy.html) Gavin is an inspiration to many who know him. He is funny, sweet, loving, and always smiling. He amazes me on a daily basis with his enthusiasm for life and learning. He loves school and insists on coming to class no matter how rough the night was for him. This disease is degenerative and he has regressed this year, but this doesn't stop him from trying to do everything his peers are doing. He loves Circle Time. Most mornings, he is too weak to get up and dance with the other kinders, so he sits in his floor sitter and bounces to the music. He sings along, even though he is usually a line or two behind.
He has been blessed with an incredible family. He has an older sister, Makenzie, who is his champion. She is so loving with him (although like all siblings, they have their moments - LOL). She worries about her brother and tries to help her parents as much as possible. Today, I saw her at breakfast and she was wearing glasses. I asked her when she had to start wearing glasses. She replied, "They are fake. I am wearing them so Susie (not her real name) won't feel bad about having to wear glasses to school." I was speechless. As much as Makenzie has to deal with at home, she is still thinking about how to make her classmates lives better. Gavin's parents, Jeff and Brandi, have dedicated their time and efforts to doing everything possible to give Gavin and Makenzie a normal life. This has not been easy. Jeff works 50-70+ hours a week working, trying to provide for his family. Brandi is Gavin's full-time caretaker. She is with him 24/7. She even attends school with Gavin as his service dog's handler. Last October, Jeff and Brandi made a difficult decision to continue to pay for Gavin's medical treatments and medications instead of their mortgage. They are in danger of losing their home. To spend time with this family is to catch a glimpse of everyday heroes.
Gavin is no longer able to play soccer or participate in physical activities. One day, his mom saw him trying to take pictures of his seizure alert dog, Hershey, in the hospital. Once he was discharged, she took him to the park and gave him a camera. He started snapping pics and has become quite the little photographer. His pictures are incredible and are now available on Etsy. Here is the link if you'd like to check out his work. http://www.etsy.com/shop/momlawrey?ref=pr_shop_more All proceeds from the sales of his pics go to his medical trust fund.
This past weekend, Gavin's story ran in our local newspaper after a reporter and photographer followed he and his family on their medical journey for the last 9 months. Today, it was picked up by USA Today. http://www.usatoday.com/story/news/nation/2013/04/07/florida-family-medical-mystery/2061739/ There is also a fund set up to help with Gavin's medical expenses. http://www.giveforward.com/fundraiser/z842/hopeforgavin Gavin's disease has no cure. It will continue to attack his organs. No one can predict what will happen next. Right now, funding for research is extremely limited. This won't change until people are more aware of this horrible disease.
Thank you so much for taking the time to read this. I would like to ask you to consider posting a link to this post on your blog or Facebook page. The more people we reach, the more likely we are to be able to raise awareness of Mito.
Have a Terrific Tuesday!!