#MakailaStrong - Fighting MS

Hi, my name is Lindsay and I'm organizing this fundraiser on behalf of a friend and colleague whose 13-year-old daughter was recently diagnosed with Multiple Sclerosis (MS).

Makaila is an 8th grader at Fulton Middle School and an Elite dancer at DuHadway Dance Dimensions with dreams of becoming a professional dancer. In March of 2023, this smart, kind, brave young lady and her family received a diagnosis that nothing could have prepared them for.

On February 16th Makaila woke up with numbness in her left arm. After following up with her Pediatrician and being referred to Sports Medicine, she was then sent for blood work and an EMG to evaluate nerve and muscle function. Shortly thereafter she was sent for an MRI of the cervical spine, the results of which led Pediatric Neurology to direct her family to come to the emergency department immediately. Makaila was admitted with Transverse Myelitis of the cervical spine (inflammation of the spinal cord) caused by a demyelinating lesion. After enduring a multitude of blood draws, hours of MRIs and a lumbar puncture the doctors developed a working diagnosis. This was the news Makaila's mother had most feared since her symptoms began. As nurses, we often tend to fear and expect the worst where our loved ones are concerned. Unfortunately in this case her fears had been confirmed and Makaila was diagnosed with MS.

MS is an autoimmune disease that attacks the central nervous system, primarily the coating around nerve cells called the myelin sheath. These demyelination attacks leave spots (called plaques or lesions) that interfere with nerve conduction. Neurologic symptoms associated with the disease include weakness, numbness, tingling, difficulty balancing, bowel and bladder issues, as well as visual changes. Childhood onset accounts for roughly 3-5% of cases making it very rare to be diagnosed in someone so young.

There is no cure for MS, but disease-modifying treatments (DMTs) can reduce the number of lesions in the brain and spinal cord, slow disease progression, help in the prevention of relapses, and delay the onset of disability which so often seems inevitable with this illness. The majority of these treatments haven't been studied in children given the rarity of pediatric onset MS and therefore must be used off-label to manage the condition in children (despite proving effective when used in adults). Sadly, due to the off-label usage, the insurance company has denied authorization for the treatment Makaila's doctors have recommended.

Given her young age and so much of Makaila's dreams being focused on dance, you can understand why this diagnosis would be especially difficult to process. There are so many unknowns and it is essential that she receive the best treatment available to slow disease progression while it's still in the early stages. We are hopeful that appropriate treatment will allow Makaila the ability to live out her dreams and continue to enjoy the kind of childhood she deserves while enduring this potentially debilitating illness.

Unfortunately, since insurance doesn't cover the cost of her medication, it is going to create an enormous financial burden on her family, as the medication alone is roughly $75,000 per year. Of course, this doesn't even account for the numerous other tests and treatments she will require as time goes on. On April 30th, Makaila and her parents will be traveling to Mayo Clinic in Rochester, MN to be seen at their Pediatric MS Center of Excellence. The cost of this trip, time away from work, and numerous other expenditures are likely to create further stressors in addition to worrying about Makaila's health and recovery.

It is my hope that some small part of that burden might be eased by the generosity of others.

With Love & Gratitude,

Lindsay Garrison

(on behalf of The Moline Family - Justin, Nicole, Makaila, Karleigh, and Hudson)

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