It was a weekend of fun and joy together with other undiagnosed families at The National Ability Center in Park City, Utah.
After more than two years of extensive testing, Alex is still undiagnosed for a progressive neurodegenerative disease that slowly over the course of the past 15 months has taken away Alex’s abilities to walk, write, talk, sit, feed himself and even to play and build with his favorite toys. The progression of the disease continues.
We received the package with the beautiful bracelets just before the bittersweet news that Alex is now aspirating certain liquids and may need a GI tube and the confirmation of a consultation at The Mayo Clinic.
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