This is my granddaughter, Betty Reed Thomas. Betty was born on October 17, 2011. In April, Betty was diagnosed with Alexander Disease after she started having seizures. I won't go into great detail here about the disease other than it is termed a "genetic hiccup" (doesn't come from either parent), is very rare, quite progressive and always fatal. It eventually takes away developmental milestones, and the ability to smile, talk, eat and finally, breathe. There is no cure. There are currently no clinical trials. There is nothing to be done other than make every minute that Betty is here with us more comfortable. And the two people who are going above and beyond what any human should have to endure to ensure that happens are Betty's parents, Warren and Tabitha. Tabitha had a job with the City of Waynesboro, but her family medical leave is about to run out and she will then lose her job. Warren tries to get side work, but the fact of the matter is that Betty requires both of them 24/7. Betty just had a feeding (G-Tube) placed on Tuesday, and is still in PICU. They take turns staying up watching over her breathing as she sleeps because sometimes she stops breathing, or doesn't take deep enough respirations. It has been such an emotional rollercoaster for her parents, yet they remain steadfastly supportive of their daughter and each other, and in spite of the horrendous reality of losing a little bit of Betty everyday, fight on.
We're keeping the roof over their heads and the lights on, but they've got normal expenses like a car payment, car insurance, etc., and inevitably, Betty's funeral expenses. They won't ask for anything themselves, so I'm asking for them.
Betty has lost her ability to smile, but I know that if she could, she would express her thanks. We're thankful to you, our extended family, as well. And if all you can give is prayer, that is appreciated too. God Bless,
Sharen and Eddie
DonationsSee top donations
- Tony, Alison & Madeline Howell
- Rhonda Deane
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more