Help Baby Brynlee

September 9th 2021

 

We are fundraising for Baby Brynlee Skye and her family, who has been emitted to Sutter Women's and Children's Hospital in Sacramento, CA .

 

Brynlee was born July 2020 with Downs Syndrome. She was born with two holes in her heart, a condition commonly found in Down Syndrome children. Being born during the midst of the COVID pandemic, Brynlee has been too high risk to socialize with most friends and family. Fortunately enough Brynlee has her older sister Blayke, who has been inseparable since Brynlee's birth. Brynlee underwent heart surgery in February 2021, and came to a full recovery and a clean health bill from her doctors. She celebrated her 1st birthday this July.

 

On August 20th, 2021, Brynlee suddenly became ill. Even though she has had underlying heath conditions since birth, the past several months she has been thriving. During the previous week she gradually became lethargic as the day progressed ending up in pediatric ICU. Brynlee has been catatonic over the following week. Her Doctors have performed numerous test, and have not been successful in diagnosing the problem. Brittany and Gary (Brynlee's parents) have been taking turns in the hospital staying with their baby girl, as the hospital will only allow one parent visiting at a time. "Gaga" (Grandma Kathy) is helping by taking care of older sister Blayke (age 4) while Gary is at work, and Brittany stays at the hospital with Brynlee. Blayke has been having a hard time understanding why her family is separated. Unfortunately, Gary is only eligible for leave without pay at his employment.

 

At this point, Brynlee has been tested for COVID-19, and Botulism amongst others. All which have returned negative. Doctors have not been able to agree on a diagnosis, however some were originally persistent that she has Infant botulism.

Because Brynlee has week muscles, her breathing is affected, and she is lethargic, she has been on oxygen and has been given a feeding tube.



As of today, Doctors still don't have a diagnosis and do not know for certain what triggered “this”. Fortunatly her Down Syndrome has nothing to do with her illness, other than the fact it will be harder recovery due to low muscle tone. She will have to relearn how to do EVERYTHING over again. They only test that has come back for certain is her 2nd MRI which has shown changes in her brain stem and major inflammation which they are referring to as an autoimmune disease.

All of Brynlee's symptoms best match Guillain-barre syndrome (miller fisher variant) but test have yet to confirm that prognosis. Because this is a neurology issue most cases are treated with IVIG treatment and steroids. She has shown great progress with this and her doctors will follow up with a MRI in a couple months to see what permanent damage has been done so we can further her PT, OT, and speech therapy. She has been accepted to Schriner's children’s hospital for acute therapy for 2-4 weeks but before we get transferred. Brynlee has to undergo surgery for a feeding plug to be inserted in her stomach. Her Doctors seem to think she will make a almost full recovery, it will just be a long road getting there. And to top it all off she could relapse in future. 

Because of her condition, doctors fear exposure to COVID could put her as further risk, and have asked her parents to avoid social exposure. This means that Gary will either be asked to stay separated from Brynlee and Brittany, or take a leave from work. Because Brittany is unable to work while she lives in the hospital, Gary's leave will make a further impact on their income. Our family is reaching out to you in hopes to support this small family of four as they support Brynlee in her recovery. Any monetary contribution is appreciated.

 

Updates to follow.