Ashlee's Ride 2009
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Ashlee's Ride 2009
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Meet Anthony....Ashlee's Ride recipient for 2009!
Who Is Anthony? From
Anthony's mother, Sarah. Anthony is at first glance your typical two year old little boy. He loves anything with wheels, sports and animals (specifically horses). Anthony was born in August of 2006, our first born. It wasn’t until December of 2006 that we had any worries. It was New Years Eve morning, we were at my mom’s when all of a sudden his eyes rolled back into his head, his body went listless and his breathing slowed. We rushed him to the hospital. Little did we know it wouldn’t be our only visit. We started noticing he wasn’t able to hold his head up and started missing milestones. He was also having seizure like episodes. No matter how many doctors we spoke to no matter how many test we did they all had the same answer. Nothing was wrong with him. Until we meet Dr. Castallanos, who said he was low tone and later figured out that Anthony had a carnitine deficiency. By this time Anthony was receiving Physical and occupational therapy and was failure to thrive. He explained that we should see a Dr. Hainline at Riley’s. We were able to meet Dr. Hainline in August of 2007. This was the first time I had ever heard of Mitochondrial Disease. Anthony was diagnosed with Reflux and was having some swallowing difficulties. In October of 2007, Anthony had one of several swallow studies done. He had always gotten sick from them, but this time he didn’t get better. He continued vomiting everyday, a few times a day. We were given every reason for why it was happening and would make our routine visit to the ER about every other month because he couldn’t stop and he would dehydrate. Anthony had his muscle biopsy done in January of 2008. He got his orthopedic braces in January. We found out in April when his results from the biopsy came back that Eosinophilic Esophugitus he had mitochondrial disease. By this time Anthony wasn’t really eating anything and we had been struggling with his weight. He was taking 4 to 5 hours naps every day because of fatigue. In May he had his g-tube placed. We were very fortunate because UMDF was having their annual symposium here in Indianapolis that June. My Husband and I were able to attend thanks to IU’s family involvement fund. It was there that we learned from other families about treatments and other related issues that Mitochondrial Disease affect, for example Eosinophilic Esophugitus. In August his naps went from 4 to 5 hours to 7 to 8 hours. Then in September of 2008 Anthony was diagnosed with Eosinophilic Esophugitus and he was started on the Riley Diet. The diet, basically consist of 5 fruits and vegetables and a few other things. His main source of nutrition was thru Elecare. After being on the diet for about 5 week his vomiting episodes started to decrease. We recently found out that he has stimbismus (a lazy eye). Thru it all he has been a trooper. He continues his therapies and is taking the “cocktail” in hopes to slow the progression of the disease. We can not thank everyone enough. It is because of people like you that we have hope that one day there will be a cure for Anthony and all who suffer from mitochondrial disease.
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