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Our daughter, Dylan has BPAN, a variation of NBIA (Neuro-degeneration with Brain Iron Accumulation), which is an extremely rare degenerative and life-threatening disease with no current treatment or cure. Dylan is very impacted by this disease, both in the form of seizures, severe developmental delays, significant difficulty communicating, and behavioral challenges. Despite all of this, she can be very happy, playful, and loving. She enjoys books (ones she can’t rip), music, dancing, and trips to the park where she can swing and climb to her hearts content.
