Help Ali Rae Barkley Access Critical Medical Care

Since 2020 I’ve been raising money on and off through GoFundMe for my 11 year old granddaughter Ali Rae Barkley’s ongoing GA-1 medical care. Through 20 surgeries and procedures, weekly treatments of dialysis, infusions, PT and OT, and her daily regimen of special dietary formula, food and supplements, you all have supported her with your donations and your prayers, and it’s been humbly appreciated every step of the way!!

Tonight I come to you once again, but with the biggest celebratory news that also requires the biggest fundraiser goal yet. Two years ago Ali’s name was submitted to be considered for genetic therapy clinical trials, and last week Ali and her mom were invited to NYC to meet the European and American research geneticists who are over the GA-1 aspect of the program. Today they got the news that Ali has been accepted into the next round for consideration!! Praise God for opening this incredible door of opportunity!!

The immediate consequence of this phenomenal news is the need for major funding to cover the initial costs of what lies ahead in the next few weeks. Another trip to NYC for medical tests with the two new genetics specialists that includes $2100 hospital fees along with a required full panel genetic testing ($2000). Add travel expenses with flights, hotel, Uber or taxi costs, food and incidentals while there those 4 days in early July ($2500-$3000).

That’s just the cost of the necessary NY trip!

On top of that Ali was already scheduled for brain stem surgery to remove protein buildup on July 15th, but that will now include a lung wash, and an MRI and a CAT scan with dye while she’s under anesthesia, plus the cost of ICU and the hospital stay.

That approximate cost is between $7000 and $8000 OVER what insurance will cover!!

Needless to say the overwhelming excitement is matched by the overwhelming need for financial help. Time is of the essence to raise the needed funds ASAP to assure Ali’s place in this next hopeful step toward what may one day lead to a less stressful and less intense daily medical life! Thanks be to God for this chance to give Ali so much more hope for her future!

So I ask each of you to donate as you can, to ask others to do the same, and most importantly PRAY over all of this!! And THANK YOU from the bottom of my heart.