Ali Rae is my 12 year old granddaughter who was born with the rare genetic disorder Glutaric Acidemia 1 (GA-1) which causes her body to reject the necessary amino acids/protein that the rest of us need. In 2020 Ali and her mom (my daughter Katie, who has been a single parent from Ali’s birth) moved to Orlando due to the need for medical specialists who are well-versed not only in their fields of expertise but also with extensive knowledge of GA-1. Today Ali has a medical team that consists of her head Geneticist at LeBonheur hospital in Memphis; a Nephrologist, 2 Neurologists, a Pulmonologist, a Hematologist, and a Gastroenterologist ALL through Nemours hospital in Orlando; a Gynecologist in California; and a Neuro-Rheumatologist in NYC. In July of 2025 Ali was accepted into a gene therapy clinical trial that could eventually lead her to a more promising future for her health care needs. She sees “Dr. T.” - a world renowned Research Geneticist who travels from Paris, France to care for his select few American genetic trial patients in NYC. Ali and Katie are required to go for treatments with him every 6-8 weeks, depending on his and their schedules.

Ali has now had 23 surgeries just in the last 6 years. She’s lost one kidney but is blessed to have a determined single kidney working on her behalf. She’s had multiple kidney and brain surgeries, lung washes, a stomach lavage, and uterine fibroids removed twice, this most recently in March of this year.

This is all in addition to 3 x weekly medical treatments in Orlando with PT, OT, levocarnitine infusions, and dialysis (when needed). Not to forget her monthly prescription meds required along with her multiple prescribed supplements.

Needless to say all of this is incredibly expensive. Through the last 6 years I have opened and closed several GoFundMe accounts to help with these ongoing expenses. Three years ago Ali lost her Medicaid and SSI disability due to decisions made by legislators who deemed it unnecessary. Imagine trying to handle all of the daily responsibilities as a single mom with the added travel across the country to continue hopeful care for her daughter with NO insurance and limited personal income as an online tutor for college sports teams.

This GoFundMe is being created today to cover 3 major upcoming travel needs for medical care between May 1st and July 2nd.

May 3rd-7th in California for testing to determine how extensive Ali’s next surgery will be in later June.

Jund 1st-4th in NYC for the next clinical trial treatments.

June 17th-July 2nd in California (again) for Ali’s major surgery/hospitalization and recovery time.

Each trip requires travels costs of flights, car rental in CA/ground transportation in NYC, and hotel expenses, BESIDES the medical costs. (Not to mention food costs.)

May’s CA trip costs: $2400

June’s NYC trip costs: $2500

June’s extended CA trip costs: $36,000

Total BASIC needs: $40,900. (That’s WITH the hospital in California absorbing $25,000 of Ali’s surgical costs!)

I am also including the costs for a 6 months supply of Ali’s prescription meds and weekly treatment costs in Orlando. That total amount to be added to the GoFundMe me goal is $12,000.00.

This a A LOT of money to try to raise! $2400 is needed ASAP! The next $2500 shortly afterwards. And the final $36,000 just 3 weeks after that!! (Plus the hoped-for costs of 6 months regular medical care.)

I NEED your help with outreach! If you cannot give toward this much needed cause, would you PLEASE at least share this GoFundMe as far and wide as you can in hopes of reaching the goal as soon as possible to help relieve Katie of the worry over this part of Ali’s care?! Put yourself in her shoes and PRAY over her mental, emotional, physical and spiritual well being during all of this! And PRAY that Ali’s body responds to ALL the medical care she is constantly receiving this year!

God has opened doors and brought Ali and Katie to places they never expected to be, much less to NEED to be. The benefits she has received through all of this far outweighs any negative that plays into this type of care. Ali just this week told her mom: “I’d quit all of it if none of it was working. But I feel so much stronger, even though it hurts so bad. But I guess God has a big plan for me!!”

PRAY first and foremost. SHARE far and wide. Donate if you can. God bless Ali and Katie! And God bless each of you!