Joshua R. - Quilt Finished in 2008
Born: December 5, 2001
Illness: Adrenoleukodystrophy, Adrenal insuffieciency, Asthma,
Joshua R.'s Story
Written by Joshua's mom in May 2008
Joshua was born December 5 2001, 11 weeks premature. He was very sick and very small he was 2lbs. 12 oz at birth. Joshua has always been a happy child. He loved to run and play ball and watch Spongebob and Diego and he loved to snack on hot dogs. He was a very happy child full of spirit. When he was 5 yrs old he was diagnosed with the Adrenoleukodystrophy.
In September of 2007 my parents and teacher noticed a change in my behavior. I started chewing everything and was forgeting things i once knew. I started seeing a neurologist who at first thought i had Fragile X, so my mom took me to North Oakland Hospital to get blood work done. The tests came back negative so we went through more tests and come to find out i have Adrenoleukodystrophy.
On January 22 2008 me, my mommy, and my grandma went to Minnesota to see some doctors who specialize in Adrenoleukodystrophy. The doctors arent giving me to long to live so my mom is considering the bone marrow transplant she is afraid cause i could get very sick. when the transplant is done i could possibly be blind and or deaf and possibly never walk again the doctors dont know. We found out my brother does not have ALD so he will be able to be a donor if he is a match. My eyes may be getting affected from the disease.
He has progressed and declined a lot and now he no longer can walk, talk, eat, he is fed with a ng tube and he is always in alot of pain. Once a no care in the world, now all he can do is lay in his bed and cry in pain. The only way he can communicate is through a cry, he can't talk and he can't move, his leg muscles tighten up to the point to were he crys in pain. He loves to be read to, and he likes his baths. He really likes to be held, he loves his daddy to hold him all the time. Joshua is a very special boy with a lot of love and a great will to live the doctors have no hope for him they say he could pass at anytime but i dont feel that is true, Joshua is a fighter and always have been.
