“He was able to give out hugs and trained to be a superhero”
Two weeks after Colten turned five, he lost all functioning in his legs. He went from being able to walk normally to not even being able to stand on his own. Colten was originally diagnosed with dopamine-responsive dystonia (DRD), a rare condition considered to be a form of childhood Parkinson’s disease.
The Georgia native was referred to Johns Hopkins Hospital in Boston for a second opinion. There, doctors ran a series of genetic tests. Through a spinal tap and after three months of waiting, Colten’s condition was finally correctly identified as mitochondrial disease. A failure of mitochondria, the specialized compartments present in every cell, can lead to cell injury and even cell death. Whole systems can begin to shut down, and the individual’s life is severely compromised. In Colten’s case, the disease has already started to negatively impact his brain, intestines, muscles, and bones.
Colten is a very sociable little boy who likes to give hugs. His dad is his “best friend”, and they bond over their mutual love of Ironman. Colten also enjoys reading, and like most children, spending time outdoors.
Kids Wish Network sent Colten, his “best friend, Dad”, and the rest of his family to Disneyworld where Colten gave out hugs to his favorite Disney characters. The family stayed at Clarion Inn Lake Buena Vista, a perfect location for enjoying all Orlando has to offer. In Colten’s case, that included two days at Disney and one at Universal and Islands of Adventure. He and his family also were treated to dinners at Hard Rock Café and CiCi’s Pizza, where Colten’s (and his dad’s) favorite superhero Ironman stopped by, courtesy of TuTu Tales. Ironman gave Colten special “superhero training”.
Kids Wish Network would like to thank the following sponsors for helping make Colten’s wish come true:
• Clarion Inn Lake Buena Vista
• Compassion Partners
• CiCi’s Pizza
• Hard Rock Café
• Merlin’s Magic Wand
• National Rental Car
• TuTu Tales
Tags: CiCi’s Pizza, Clarion Inn Lake Buena Vista, Compassion Partner’s, dopamine-responsive dystonia, dystonia, GA, Georgia, Hard Rock Café, Johns Hopkins Hospital, Merlin's Magic Wand, mitochondrial, Mitochondrial Disease, National Rental Car, spinal tap, TuTu Tales