Gift-A-Gown To A Hospitalized Child In Memory Of Jaley

Gift-A-Gown To A Hospitalized Child at CHOA-Scottish Rite In Memory Of Jaley

One day in the hospital, Jaley's aunt and uncle brought her a Brave Gown with a unicorn on it. Family came to see her and by the next day we knew we needed to let her go. The only thing at that point keeping her going was the machine making her breath. I still have her Brave Gown. And it brought us a little joy those last two days with her. So for her birthday this year we would like to help gift other children in the hospital their own Brave Gowns. Being in the hospital is hard. This is something small we can do to help and honor our angel. Please sponsor a Brave Gown in her memory to help bring comfort and smiles to hospitalized children when they need it most. Thank you! 

-Jaley's Mom, Ashley

Or click the link below to sponsor a specific child on their waiting list:

https://www.bravegowns.com/collections/sponsor-a-brave-gown-for-a-child-on-our-waiting-list

About Jaley:

Jaley was born March 9th, 2018. Delivery was normal with the exception of her being born "floppy". Then she failed her hearing test.  We saw audiologists and then an ENT who referred us to have an ABR done December 2018. We were absolutely devastated when the Surgeon and Audiologist told us she had moderate to severe bilateral sensorineural hearing loss. Right around that same time our amazing Pediatrician had bloodwork done which came back showing Jaley had elevated liver enzymes. We had no idea why and were urged to see a Geneticist. Jaley was diagnosed at 15 months with Zellweger syndrome. They gave us a print out, told us not to Google it and to take her home and enjoy her. Of course the first thing we did was google it and our whole world fell apart.

Zellweger syndrome is one of a group of four related diseases called peroxisome biogenesis disorders (PBD). The diseases are caused by defects in any one of 13 genes, termed PEX genes, required for the normal formation and function of peroxisomes. Peroxisomes are required for normal brain development and function and the formation of myelin, the whitish substance that coats nerve fibers. It affects 1 in 50,000 and the prognosis is poor. Most infants do not survive past the first 6 months, and usually succumb to respiratory distress, gastrointestinal bleeding, or liver failure. There is no cure or treatments. You manage the symptoms. I remember not thinking she'd make it to her 2nd birthday and not wanting to buy clothes too big because I wasn't sure she'd get to wear them. 

Jaley fought really hard everyday and we are so blessed we had such a silly, sassy, strong and brave little girl. After her diagnosis we saw ton of specialist and Jaley had labs done often to monitor her liver enzymes levels. 2019 was a really hard year full of appointments traveling an hour each way to Atlanta. Every appointment seemed to lead to 5 more. She started therapy and continued to beat the odds and progress even if it was just a little at a time. Jaley wore hearing aids, glasses and had leg braces. She was nonverbal and never really walked without an aid.

 In February 2021 she sat up by herself in her bed. That was huge for her!!! Although Jaley was really a tough little girl, even something small like a cold could be hard on her. The night before Mother's day that year we rushed her to Scottish rite where she was diagnosed with parainfluenza II. She was there a week and it was honestly the one of the scariest week of our lives.  She would go on the be hospitalized a few more times with one visit resulting in a NG tube and then her gtube.

Jaley taught us to not take anything for granted. Everyone who met her fell in love with her. Her smile and laugh would make you melt. She really was the strongest little girl whose fighting spirit helped her make it to 5 years and 19 days. That and God.  She loved her family especially her brother, her puppies, school, church, Annie's cheddar bunnies,  butter biscuits, to swing and to ride around in her motorized car one of her uncles gave her for Christmas. 

Jaley started to regress Fall 2021. She lost all the skills she worked so hard for. She was no longer able to sit up by herself, hold her sippy cup or hold her head up. Her muscle spasms became horrible and she started botox treatments. Towards the end of 2022 things had progressed so much she was really struggling. Her breathing was labored and we had to monitor her oxygen levels constantly. March 27th 2023 we had to call an ambulance at 3 am and were rushed to our local hospital and then Scottish rite. Her oxygen had dropped to a 34. She was admitted to the PICU. It was that day her Aunt and Uncle brought her a Brave Gown with a unicorn on it. Family came to see her and by the next day we knew we needed to let her go. The only thing at that point keeping her going was the machine making her breath. I still have her Brave Gown. And it brought us a little joy those last two days with her. So for her birthday this year we would like to help gift other children in the hospital their own Brave Gowns. Being in the hospital is hard. This is something small we can do to help and honor our angel.

-Jaley's Mom, Ashley