Alexander was born with CHARGE syndrome and nemaline myopathy. He survived one open heart surgery and needs hearing aids, a second heart surgery, and stem cell therapy.
Courtney Maksim for AlexanderHelps support the costs ahead of Alexander's second open heart surgery, planned for when he's 3 to 5 years old — he's still oxygen-bound today.
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This is Alexander, he was born October 2023! Alexander was born very sick — he had open heart surgery in December of 2023 and is still oxygen bound pending his next open heart surgery when he is 3-5 years old. Alexander has a rare genetic disease called CHARGE syndrome as well as nemaline myopathy, which all plays into why he is so small!
Alexander is also deaf, and we are in the process of working on bone conduction for his hearing.
We are raising money for his hearing aids as well as his next open heart surgery, and we are hoping to get him healthy enough to raise money for stem cell transplants and therapy!
He is such a sweet, smiley boy and he deserves the best future! We didn't know of any of these things before he was born, so it was a shock when everything came to light.
Any donations will go to his health fund!! Thank you!
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