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Meet Tiny Light Donovan. He loves shaking his maracas and enjoys spending time in his therapy pool. His brother and sister talk to him, read to him, and play with him every day. He can’t communicate verbally, but expresses himself by clapping and humming.
In August 2010, Donovan was a healthy 8-year-old boy. In the following months, his health rapidly deteriorated. Donovan has severe brain damage and is now deaf, blind, and mute. He also averages 3-4 seizures a day and is fed with a GJ tube. In July of this year, Donovan’s family was told that he likely had Alper’s disease, a mitochondrial disease that consists of seizures, blindness, deafness, liver damage, and eventual death. However, a month later when Donovan was retested, the tests came back negative and he currently has no diagnosis. He has been tested for viral, bacterial, autoimmune, mitochondrial, environmental, and genetic diseases; however, doctors have yet to find out what caused his health to deteriorate.
His mother’s attitude remains positive. Her message to other parents is to “look at the strength your child has, take that strength, and go with it. Wake up each day and tell yourself it's a new day and, good or bad, your child made it another day.” Donovan still has challenges ahead but as his mother says, “he is a miracle and I believe he will fight as hard as he possibly can.”
Story by Emily Harrison
In August 2010, Donovan was a healthy 8-year-old boy. In the following months, his health rapidly deteriorated. Donovan has severe brain damage and is now deaf, blind, and mute. He also averages 3-4 seizures a day and is fed with a GJ tube. In July of this year, Donovan’s family was told that he likely had Alper’s disease, a mitochondrial disease that consists of seizures, blindness, deafness, liver damage, and eventual death. However, a month later when Donovan was retested, the tests came back negative and he currently has no diagnosis. He has been tested for viral, bacterial, autoimmune, mitochondrial, environmental, and genetic diseases; however, doctors have yet to find out what caused his health to deteriorate.
His mother’s attitude remains positive. Her message to other parents is to “look at the strength your child has, take that strength, and go with it. Wake up each day and tell yourself it's a new day and, good or bad, your child made it another day.” Donovan still has challenges ahead but as his mother says, “he is a miracle and I believe he will fight as hard as he possibly can.”
Story by Emily Harrison
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