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Hello everyone, my name is Jama. I'm reaching out today with a heavy heart. If you know me, then you know my daughter, Taylin, has been chronically ill since late 2023. She was diagnosed with Postural Orthostatic Tachycardia Syndrome. After seeing many specialists and showing severe decline, she was diagnosed with Mast Cell Activation Syndrome and Ehlers-Danlos Syndrome in September. This combination is often referred to as the Trifecta. She has spent the last 6 months mostly bedbound due to recurring flares. During these flares, she suffers from syncope, seizures, reactions to medications/food intolerance, and an inability to maintain her weight.
Recently, this decline has resulted in a diagnosis of gastroparesis, and she is receiving her nutrition via a feeding tube. After several weeks of hospital stays since December and complications, she is being referred to a children's hospital better fitted for complex conditions that is over 350 miles from our home. While we are excited for the possibilities that this will bring for her ongoing care, we can't do this alone.
We are asking for donations that will help cover the following:
Travel: to and from the hospital; family will also have to travel from out of state to stay with my other children.
Living expenses: vehicle maintenance/repair, rent, utilities, groceries.
Medical expenses: this includes her feeding necessities, mobility aids, medications, specialized testing required, copays, and specialist appointments that are out-of-pocket and not covered under insurance.
Any amount given will go directly towards these expenses and allow us to focus on her care and recovery as we navigate the unknown. If you aren't able to donate, please consider sharing this link with your network. Your prayers, positive vibes, and support are truly appreciated.





