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Jaxon strong
Donation protected
Hi, my name is Jessica. I’m raising funds for my son Jaxon who is fighting so hard just to stay alive. On his 2nd birthday in August 2023, we got concerning labs back which led to his diagnosis’s. He has dyskeratosis congenita and congenital amegakaryocytic thrombocytopenia. We recently found out he has Hoyeraal–Hreidarsson syndrome, which is a more severe form of the dyskeratosis congenita. He has needed multiple surgeries. He has GI issues so has had a G tube for feeding. He is hearing impaired and non verbal. He went through intense chemotherapy leading up to a bone marrow transplant. His bone marrow transplant at Memorial Sloan Kettering seemed to be successful, but just before he was going to be released to outpatient care, he got a rash that covered his entire body. He was experiencing frequent fevers. His skin began to peel right off his little body. He got pneumonia. His oxygen levels dropped below 30%. In a matter of days his health dramatically declined. He went from a breathing tube, to a CPAP mask, to being intubated and is on a ventilator. He is currently in the pediatric intensive care unit at Cornell to have access to a more powerful ventilator, still fighting so hard for his life.
Jaxon is the sweetest happiest boy. His smile could light up a room. He has remained strong throughout everything. We have a very long road ahead of us as he continues to fight just to breathe and heal.
Any donation is so greatly appreciated. Funds raised will go towards travel expenses, maintaining a house to go home to once he is healthy and medical expenses that are not covered. I am unable to maintain a job while staying inpatient with him. Donations are allowing me to be here for my son in his greatest time of need. I am eternally grateful for this.
If you are not in a position to donate, please share and keep Jaxon in your thoughts. Any support and kind words are greatly appreciated. Thank you
Organizer
Jessica Cesana
Organizer
Kingston, NY