Mayo Clinic Evaluation for Eli Bull

This is so awkward and uncomfortable for me in every way.. and more importantly, my beautiful boy has so many complex medical issues that one the world's top neurologists wants to evaluate him. For the past year and half, I've been fighting on every front to get my Eli the evaluations, procedures, therapies, specialists, and supports he needs and deserves. Each provider notes how complicated he is and how atypical his presentations are. We have an ever-growing list of complex special needs diagnoses and yet there are pervasive symptoms that are significantly worsening; the most competent specialists in Atlanta have no idea why, and now we're accepted to Mayo Clinic Minnesota in January 2022. He has a brain lesion whose location is exactly at the intersection of lobes responsible for the areas of his greatest struggles. His symptoms steadily worsened over the past year and about 2 months ago, a massive and almost overnight decline- clinically significant, heart wrenching, and terrifying- and without any observable cause. I am so grateful for the professional and personal relationships that made these appointments possible. I am also absolutely petrified that this level of specialized expert sees reasons to evaluate my son in person and so quickly. Stomach in knots, swirling thoughts, constant nausea, cannot see how I can handle the answer(s) that I've been fighting so hard to get.

For those that know me, I am a totally single parent, responsible for every aspect of my children's care (financial, emotional, medical, educational, ...all of it) and I do not have biological family support. With Eli's upcoming assessment at Mayo Clinic, I have expenses for lodging and plane tickets, transportation, food,  and all the medical costs. We will be at Mayo at least 2 weeks for the evaluations; variable depending on their findings. In addition, my daughter will be here, we have 2 dogs who will need care, ...

On behalf of my beloved boy, I am making myself terrifyingly vulnerable and asking for help. I cannot do this by myself. I recognize no one owes us anything, so many families are struggling from COVID-impact, and with my son's life on the line, I am asking for any time or amount of help that is possible.

The expenses are mounting. I have a secondary health insurance for Eli-qualified by the state for special needs children- and despite my best efforts thus far, Mayo will not accept it.

Ultimately, however, money does not matter. The greatest gift is love showing up. During a time when every part of life feels especially precarious, your showing up for us is appreciated more than I can ever adequately express.