Help Aashirya Get Life-Saving Surgery

Hello everyone, my name is Parra Robinson. I’m setting up a GoFundMe on behalf of my beautiful daughter, Aashirya. Where to start... As many of you know, Aashirya was born with two rare syndromes: Multiple Pterygium Syndrome, Pierre Robin Sequence, a weak immune system, and a heart defect on top of having a severe case of scoliosis.

My heart has been heavy for some time now, because I’ve lost two people who I went to for moral support. I’ve kept a lot of things to myself about Aashirya’s health, but I’m tired of keeping it to myself; it’s been eating at me. I’ve fought tooth and nail for years for my daughter's health. Aashirya is a strong little girl, you all have no idea what she’s going through.

Aashirya's doctors have told me things that have broken me to my core, had me crying for days. I’ve sat at the bottom of her bed, looked at her, cried, and prayed for the best. Her health has taken a rapid decline in the past few years. She needs surgery on her spine. The doctors told me her scoliosis is making it hard for her lungs to expand and her chest cavity is narrow, making her heart work harder.

Aashirya went from being off of oxygen and the ventilator to having to be put back on both around the clock. She’s been hospitalized multiple times because she can’t fight off infection like she used to. I’ve been fighting with doctors and insurance to cover the things that need to be covered: supplies, milk, equipment, and surgeries.

I’ve gone to surgery dates, got there, and the day of her surgeries was told it’s too complicated. After months of going back and forth doing lab work, X-rays, them telling me they can do it. Just for her to be brought back to me within 2-3 minutes stating that they can’t do it, it’s not worth it. I’ve gone to appointments where a doctor has grabbed her legs, moved it side to side, stated nothing can be done.

I’ve asked doctors about her getting a back brace, to them telling me she is good, she doesn’t need one. I’ve fought tooth and nail for equipment insurance, telling I can have one or the other. In all reality, she needs both things to better her health. I’m currently fighting her not getting the right supplies or milk, coming out of pocket for things that I can’t afford, putting me in debt, but I have to do what I have to do for my child’s health.

Like me looking into other states who specialize in the surgeries Aashirya needs. I just need a little help with getting Aashirya and I started in the right direction. Please share and donate, anything will help.