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This year has brought my grandson, Tobi, and his parents life-changing challenges. In January, Tobi was diagnosed with Autism and Global Developmental Delay. While learning how to help Tobi navigate life and to give him the best tools for life, they were hit with another gut punch. Tobi was diagnosed with CMT2A (Charcot Marie Tooth Type 2A). This is a rare progressive neuromuscular disease that causes muscle weakness and eventual motor function loss in the limbs. In early-onset cases CMT2A can also affect vision, hearing, and breathing. Tobi is a boy who loves to be on the move—running, jumping, and playing. Our biggest fear is the day this disease begins to take that away, especially while we are still working so hard to help him find his "voice" to communicate. We are in the process of testing to find out if he is symptomatic already or not. Tobi has also been diagnosed with ARFID (Avoidant Restrictive Food Intake Disorder) and wandering.
We are asking for your prayers and support as we navigate therapies, specialist visits, specialized equipment, and the road ahead. One very important piece of equipment is the Cubby bed. Insurance has already denied it but this would bs a game changer for Tobi having a SAFE place to sleep and the whole family to getting a good nights rest. But also this would help his parents pay medical bills, travel expenses, and supply Tobi with what he needs.
We want to give Tobi every opportunity to be seen for the amazing boy he is, far far beyond his diagnoses.