Miller is a resilient, joyful, and playful kiddo who loves Mickey Mouse, swimming, and snuggling.
At 15 months old, Miller was diagnosed with Leigh Syndrome, a severe neurological disorder characterized by progressive loss of mental and movement abilities. Miller’s body is running off less energy than it can sustain, like a house running on a 9-volt battery. There is no cure or treatment at this time although we are raising funds for Cure ATP6, a research opportunity out of UT Southwestern that is aiming to silence and replace the mutated gene, maternally inherited in Miller’s case, in order to stop the progression of the disease and hopefully reverse damage. For more information, click here.
Miller is in need of a pediatric standing frame to help deepen his hip joints to prevent hip dysplasia; orthotics as he outgrows his current set; medications that are working! but are costly; adaptations to our home/vehicles, like a swivel car seat to help us get him in and out of the car as he grows or wheelchair accessible vehicle; upgrades to his AAC (augmentative and alternative communication) device as he grows and develops; and more.
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