Joshua G. - Quilt Finished in 2009
Born: July 26, 2005
Illness: Mitochondrial Disease Complex I, Seizures, Dysautonomia, Hemiparesis
A Thank You From Joshua's Family!
2/19 and 2/22/2009
Thank you so much. I sat here in tears as I looked at it (seen from email pictures before it had been sent). These people are just angels and they don't know what they have done for these kids!!! It means not only a lot to the kids but also to us, the parents, who watch our children who live through these terrible diseases. Thank you again. God bless you all!!!
Nicole and Joshua
I just wanted to let you know that we got Joshua's quilt yesterday!!! Oh my gosh, it is beautiful and it took my breath away. He LOVES it and calls it his "Special Blanket" Now he must have it everywhere he goes. The minute he got it he wanted to take it to my mothers for her to see. We are blessed enough to live around the corner from my parents so we went for a visit. The funny part is that he was so protective of it that he made me put it back in the box and even now when he is not using it he wants it back in his "blanket box". It was nice for him to have it today since he was not feeling so good and just wanted to lay on the couch for most of the day. I will take some pictures and send them to you. Right now he is sleeping soundly in his bed with his "Special Blanket". All of those who stitched this have a special place in our heart because I know that this will bring our son much comfort amidst the craziness of his disease. God bless all of you!!!
Nicole and Joshua
Joshua G.'s Story
Written by Joshua's mom Nicole in September 2008
Joshua was born at 7lbs 13 ozs and until he was 4 months old looked and acted like all normal babies. One December evening he was taking a nap and while in his fathers arms began having a grandmal seizure. We rushed him to the hospital where doctors assured us it was nothing to worry about. The following day he began having another on when we rushed him to a major trauma center where he was kept for 3 days and later discharged with still no answers for his seizures.
Joshua's pediatrician at the time had looked over all of Joshua's records from the hospital and told us that he thought or son had the same disease his son had. We would need further testing in Atlanta, Ga. Right before his first birthday we flew him to the specialist there who preformed a live muscle biopsy and several other tests to see what was causing all of his developmental delays and seizures. Testing took 4 months to get results from and in October of 2006 we received the results in the mail that our little boy had Mitochondrial Disease Complex I, a rare metabolic disorder that is life threatening. There is no cure for this disease or medication and doctors only treat the symptoms. Not many doctors are familiar with the disease so when our pediatrician closed his office we were forced take Joshua to Houston TX for treatment.
Joshua looks like a "normal" little boy just like most of the children with this disease. He sees tons of doctors and the simplest of illnesses can be Life threatening for him so he is watched closely. He remains developmentally delayed and his medical problems are worse when he is sick since he does not make enough energy from the food he eats to support his body when he is well, let alone sick. Going outside is limited due to the fact he can't control his body temperature or other body functions if he is too cold or hot.
We try to allow him to live his life as normal as possible. Recently we had him evaluated for the local handicap preschool where he now goes. He LOVES school even though he has only been there for three days at this point. Our first trip to the specialist in Houston, TX is schedule for this October where they will see if Joshua's brothers also have this disease. We are truly blessed to have him in our lives and could not imagine it without him.
