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About Holt

Holt is an active, vivacious pre-schooler. He loves trains, his siblings, pancakes and eggs. He loves to laugh, sing twinkle- twinkle little star and go to the park. He always has a smile on his face and his curly hair stops traffic!

Holt was diagnosed with Cystinosis in February 2007, three months after his first birthday. When he was 13 months-old the doctors noticed that he was not gaining weight, had severe constipation, an unquenchable thirst and had fallen off of the growth charts. It took 3 months, numerous tests and a lengthy hospital stay to diagnose this incredibly rare disease.

Like all Cystinosis patients, Holt receives a cocktail of medications every 6 hours of his life. He receives supplemental nutrition through a gastric tube which was inserted into his stomach when he was 15 months old. He will ultimately require hourly medications to prevent blindness and will most certainly require renal transplantation at an early stage of his life.

Holt is a fighter and is able to take all of this in stride quite well. He maintains an incredibly warm spirit, a gentle disposition, rarely complains, fights through continual nausea with a grin and lives a full day every day. He teaches us how to be strong, how to fight, how to live, love, laugh and most importantly---to never give up.

We are lucky to have such a joy in our lives.



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