Brinlee's fight against GBS:Miller Fisher Syndrome

Hello everyone I'm Brinlee's aunt Amber and I'm raising money to help Brinlee's fight against Guillain-Barré syndrome- Miller Fisher Syndrome variant.

Brinlee is currently at a local children's hospital in Orlando alongside her mother Alysia, but unfortunately the cost of her medically necessary procedures and treatments are not being covered by her insurance. This has taken a huge emotional toll and financial burden on Alysia as a full time working mother of 4 young children. Due to Brinlee continuous care and extensive testing at this time, Alysia has been unable to work in order to be at Brinlee's side 24/7. Any funds provided to Brinlee will be disbursed directly to Alysia to ease the financial burden to pay for things such as medical expenses, food, transportation, and overall care for Brinlee's well-being during her long stay at the hospital.

We ask everyone to please donate to Brinlee's cause even if its only a couple dollars, let's come together as a community and make a difference. Please also pray for our family, as we know God is watching over Brinlee during this difficult time but need strength to overcome these challenges.

Brinlee's backstory: Brinlee was a super healthy 9 year old with no history of medical problems up to this point. She started complaining of headaches, fatigue, and leg pain a little over 1 month ago but was thought to be growing pains. After 2 weeks of increasing discomfort, Brinlee was diagnosed with a severe case of strep throat in which the ER doctor mistakenly told Alysia it was normal for it to cause leg pain and lethargy but it would soon go away.

While Brinlee's strep throat infection did quickly resolve following antibiotics, but her symptoms of headaches, fatigue, and leg pain only became worse and quickly advanced further 2 weeks later, into Brinlee not being able to get out of bed, unsteady balance, vision changes, progressive nerve and muscle pain in her limbs, difficultly walking and standing, left sided weakness, tremors, and facial droop. Alysia knew something was immediately wrong and this was beyond strep throat. Brinlee was rushed to a specialty children's hospital for extensive neurological evaluation where she has been diagnosed with Guillain-Barré syndrome- Miller Fisher Syndrome variant.

This a rare but very dangerous condition that affects one to two people per million each year. This neurological disorder directly impacts the cells of the nervous system such as the myelin sheaths, which insulate and protect the nerve fibers that conduct messages from the brain and spinal cord. This occurs due to a hypersensitivity reaction following a bacterial or viral illness, in which the immune system attacks the nerves antibodies and thus damages the nerves ability to send and receive signals to the body.

Since Brinlee's recent diagnosis, she has started on a multitude of treatments such as intravenous immunoglobulin (IVIg) and/or plasma exchange. IVIg consists of infusions of high doses of antibodies containing highly purified, pooled plasma from generous blood plasma donors. At this time doctors do not know when Brinlee will be able to leave the hospital as she has a long recovery ahead of further testing, treatment infusions, and physical therapy. While these treatments are vital to her recovery, they are extremely costly.

Overall prognosis for children with GBS-MFS is often favorable, but because of the nature of this disorder and not being diagnosed properly in the beginning, we don't know how severely damaged Brinlee's nerves are and to what degree of function she will recover. Average treatment time for GBS-MFS is 12 weeks following an extensive rehabilitation period to regain strength and function.

Brinlee’s spirits have been very broken by this entire experience and just wants to get better and go home to see her siblings that she cherishes. She doesn't understand why this is happening. Brinlee is the most vivacious, kind, and unique young lady. It breaks my heart to see her like this. I encourage any one who knows Brinlee, friends and family alike, to reach out to her. Please let her know you are with her and will keep fighting for her to have a full recovery! She needs all the support she can get right now!