Ali Rae Barkley Ali Rae's GA-1 Journey

First post: Mar 15, 2022 Latest post: Jan 15, 2024
" Ali Rae has faced many medical obstacles in her life but this past year has been the most daunting. The results of the newborn screen diagnosed Ali Rae with Glutaric Aciduria Type 1 when she was 5 days old. Glutaric aciduria type 1 (GA1) is a rare but serious inherited condition. It means the body can't process certain amino acids ("building blocks" of protein), causing a harmful build-up of substances in the blood and urine. Normally, our bodies break down protein foods like meat and fish into amino acids. Any amino acids that aren't needed are usually broken down and removed from the body. Babies with GA1 are unable to break down the amino
acids lysine, hydroxylysine and tryptophan. Normally, these amino acids are broken down into a substance called glutaric acid, which is then converted into energy. Babies with GA1 don't have the enzyme that breaks down glutaric acid, leading to a harmfully high level of this and other substances in the body. High levels of this in these
children can lead to metabolic strokes, heart attacks, and other major health issues.

Up until last year, Ali Rae lived a relatively easy life, with no metabolic strokes or serious issues from her GA-1. But, we have recently found that Ali Rae's kidneys have been affected by GA-1. This past year, Ali Rae has undergone multiple surgeries removing necrotic parts of one kidney, and getting stents. The most serious surgery to
date is coming up March 21st. 

On March 21st, Ali Rae will undergo a ten hour surgery. This surgery will replace the stent in her partial kidney, as well as a stent in her larger full kidney. This surgery is risky, but our only option at this point. Because not a lot is known about GA-1, the research we have on kidney issues are not promising...but we have a God who holds
infinite promises!!! Until March 21st, Ali Rae is undergoing weekly dialysis (at home unless something goes awry) and weekly Levocarnitine infusions. Every two
weeks, she receives an IV of D10, sugar water essentially, to ensure her body does not dehydrate. " 
The note above is from Ali's amazing mama, Katie. Despite all she has going on, Ali Rae is a boundlessly optimistic and joyful girl! She finds joy despite and through the hardships, and lifts those around her in doing so. She laughs even when she's hurting, and she loves the simple gifts of normal life. She loves her school work,  swimming, arts and crafts, and being around her friends and family!

The purpose of this Caring Bridge site is to keep family and friends updated on medical procedures as they occur as well as provides a place for us to share specific prayer requests for Ali and Katie. Katie and Ali both have amazing attitudes about all that they are dealing with but as you can imagine there are many mental, logistical, and financial burdens along with the physical ones. In order to help with some of the financial burdens a Go Fund Me has been set up by Ali's Tini (her awesome grandmother) and that site is linked on the "Way's to Help Tab" of this page. 

Thank you for following along with Ali Rae's journey, for praying for Katie and Ali and for giving as you feel led! 

*Just a logistical note to avoid confusion: the "Tribute" section of this page supports Caring Bridge the website and the Go Fund Me link that supports Katie and Ali Rae is listed in the "Way's to Help" section.

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