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Hi, my name is Cindy, and I’m Bleu’s mom.
Bleu is a bright, joyful 7-year-old who loves singing, laughing, and spreading happiness wherever he goes. His energy and love for life light up every room, and he is surrounded by so much love from his family. He adores playing with his brothers and his dad, and every day with him is a gift.
In December 2025, our world changed forever when Bleu was diagnosed with Adrenoleukodystrophy (ALD), a rare and devastating genetic disease that attacks the brain and adrenal glands. This diagnosis has been overwhelming, and every day is a fight to help Bleu live life as fully as possible. ALD is progressive, and while there is no guaranteed cure, we are determined to explore every therapy and clinical trial that could give Bleu hope.
Unfortunately, Bleu’s diagnosis came too late for treatments that could slow the disease—his Loes score is 22/34, which reflects the extent of damage in his brain. This makes some treatments risky, but Bleu remains vocal, active, and full of life.
Even in the face of this disease, we believe in hope and miracles. With God, all things are possible. We are working tirelessly with specialists, researchers, and medical teams to give Bleu the best chance at a meaningful life.
Life now is a mix of doctor’s appointments, therapies, and cherishing joyful moments with Bleu. We want him to keep singing, laughing, and living without limits, despite this disease.
Funds raised will go directly toward:
• Clinical trials that could give Bleu hope for a cure
• Daily care and support to improve his quality of life
• Family support as we navigate this challenging journey
Every donation, no matter the size, brings us one step closer to giving Bleu the life he deserves.
Even if you cannot donate, sharing our story helps raise awareness about ALD and the urgent need for research. Thank you for helping us fight for Bleu’s future.
Your love, support, and generosity mean the world to our family. God answers prayers so please always keep my son in yours.
With hope, Cindy & Bleu
In December 2025, our world changed forever when Bleu was diagnosed with Adrenoleukodystrophy (ALD), a rare and devastating genetic disease that attacks the brain and adrenal glands. This diagnosis has been overwhelming, and every day is a fight to help Bleu live life as fully as possible. ALD is progressive, and while there is no guaranteed cure, we are determined to explore every therapy and clinical trial that could give Bleu hope.
Unfortunately, Bleu’s diagnosis came too late for treatments that could slow the disease—his Loes score is 22/34, which reflects the extent of damage in his brain. This makes some treatments risky, but Bleu remains vocal, active, and full of life.
Even in the face of this disease, we believe in hope and miracles. With God, all things are possible. We are working tirelessly with specialists, researchers, and medical teams to give Bleu the best chance at a meaningful life.
Life now is a mix of doctor’s appointments, therapies, and cherishing joyful moments with Bleu. We want him to keep singing, laughing, and living without limits, despite this disease.
Funds raised will go directly toward:
• Clinical trials that could give Bleu hope for a cure
• Daily care and support to improve his quality of life
• Family support as we navigate this challenging journey
Every donation, no matter the size, brings us one step closer to giving Bleu the life he deserves.
Even if you cannot donate, sharing our story helps raise awareness about ALD and the urgent need for research. Thank you for helping us fight for Bleu’s future.
Your love, support, and generosity mean the world to our family. God answers prayers so please always keep my son in yours.
With hope, Cindy & Bleu
Organizer
