Our warrior was diagnosed at 13 months old after a week of lethargy, some coordination issues and a head tilt. He underwent a GTR on 06/05/24 in Richmond, VA. Treatment (Head Start IV) is likely to start next week at the end of June.
At 13 months, I'm not sure he was unique yet in any particular way. He was just starting to get his legs under him and find his voice when we were hit with this news. He has been a bright light in our families and friends lives every day since he was born with his infectious smile, furrowed brow and bravery. Even after multiple procedures and a 16-day PICU stay, "J-Boy" continued to brighten up the halls of the PICU while cruising with his favorite walker and going for wagon rides.
I'm always available to share more about Ferocious Joseph as he leads us into battle against this garbage disease. Lil J's Brigade stands ready behind him to win this fight.
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If you would like to make a donation by mail please send a check to: The Cure Starts Now Foundation; 10280 Chester Road; Cincinnati, OH 45215 and put the child's name in the memo.
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