Donation protected
Hi, everyone. My name is Christina, but many of you know me as The Vax Fairy. I hear from a lot of families during their difficult times and this story in particular has really touched my heart.
Little Yiannis, who will be two in July, has already been through more than a lot of adults in his young life. Born early in the pandemic, he and his mom Angela, who is immunocompromised, went through a very traumatic birth, where the cord was wrapped around his neck, tangling him and depriving him of oxygen and blood in utero. He spent two weeks in the NICU and has had failure to thrive. As he’s gotten older, Angela and Chris have been increasingly concerned because Yiannis has been missing all of his milestones. He’s non-verbal, barely able to walk, and needs many therapies to try and help him with these and other skills. He currently has an autism diagnosis and a possible cerebral palsy diagnosis as well.
After Yiannis started to regress recently, doctors brought him in for extensive testing. The family was devastated to learn that their little boy has a genetic IRF2BPL-related disorder, a group of very rare neurodegenerative disorders with neurological symptoms that get worse over time. Loss of speech, motor skills, cognitive ability and other global effects are common. In the worst cases, with specific mutations like Yiannis’s, the disorders can also cause blindness and death at a young age.
This condition is so rare that even doctors don’t know much about it. There are research trials and some experimental treatments, but most are in other states like Ohio and other countries like Germany. The costs are astronomical (millions of dollars for stem cell transplant, which is one of the more promising options) between medical and travel expenses. But Angela and Chris will do everything they can to help their baby boy, no matter what. They also desperately want to help other kids diagnosed with this disorder so that no other family has to suffer like this.
If you can donate anything and share this fundraiser as widely as possible, we would be eternally grateful. If you can’t donate, please still share to spread the word. If you also have any information that might help, please share that with us as well. And please send all good thoughts, wishes, prayers — whatever form of that you prefer — to little Yiannis and his parents. Thank you so much for whatever you can do to help during this very difficult time.
Little Yiannis, who will be two in July, has already been through more than a lot of adults in his young life. Born early in the pandemic, he and his mom Angela, who is immunocompromised, went through a very traumatic birth, where the cord was wrapped around his neck, tangling him and depriving him of oxygen and blood in utero. He spent two weeks in the NICU and has had failure to thrive. As he’s gotten older, Angela and Chris have been increasingly concerned because Yiannis has been missing all of his milestones. He’s non-verbal, barely able to walk, and needs many therapies to try and help him with these and other skills. He currently has an autism diagnosis and a possible cerebral palsy diagnosis as well.
After Yiannis started to regress recently, doctors brought him in for extensive testing. The family was devastated to learn that their little boy has a genetic IRF2BPL-related disorder, a group of very rare neurodegenerative disorders with neurological symptoms that get worse over time. Loss of speech, motor skills, cognitive ability and other global effects are common. In the worst cases, with specific mutations like Yiannis’s, the disorders can also cause blindness and death at a young age.
This condition is so rare that even doctors don’t know much about it. There are research trials and some experimental treatments, but most are in other states like Ohio and other countries like Germany. The costs are astronomical (millions of dollars for stem cell transplant, which is one of the more promising options) between medical and travel expenses. But Angela and Chris will do everything they can to help their baby boy, no matter what. They also desperately want to help other kids diagnosed with this disorder so that no other family has to suffer like this.
If you can donate anything and share this fundraiser as widely as possible, we would be eternally grateful. If you can’t donate, please still share to spread the word. If you also have any information that might help, please share that with us as well. And please send all good thoughts, wishes, prayers — whatever form of that you prefer — to little Yiannis and his parents. Thank you so much for whatever you can do to help during this very difficult time.
Organiser and beneficiary
Christina Brisson
Organiser
Chappaqua, NY
Christopher Papazoglou
Beneficiary