Ma'Koi's Fight for Healing

Ma’Koi’s Fight for Healing

Who is Ma’Koi?

Ma’Koi Robinson is a 13-year-old 8th grader at Crestwood Middle School in Grand Rapids, Mi. He loves sports and dancing and has played on local baseball and basketball teams. He has the biggest smile and the kindest heart. Ma’Koi’s life took a drastic turn in January 2015. He suffered several major seizures and had a long hospitalization that left doctors baffled and confused of the diagnosis. Ma’Koi’s seizures were not at all typical; they came often and lasted long. He endured countless hours hooked up to EEG machines and had multiple brain imaging tests. He missed many days of school and was no longer able to do what he loved most. A pediatric neurologist headed his advanced medical team at Helen Devos Children’s Hospital. Ma’Koi has been prescribed a lot of different medications, many that are expensive and has caused severe drowsiness. He had all these side effects without ever truly having relief of his seizure and associated leg pain, spasms and stiffness. Finally Ma’Koi had a spinal tap performed. His wonderful doctors decided to send the fluid away for analysis at Mayo Clinic in hopes of getting a diagnosis so they can know how to treat Ma’Koi’s illness. To everyone’s surprise, Mayo Clinic diagnosed Ma’Koi with an extremely rare disorder called stiff leg syndrome.

What is Stiff Leg Syndrome?

Stiff person syndrome (SPS) is a rare neurologic disorder that causes muscle stiffness, rigidity and spasms in the muscles of the arms and legs which leads to difficulty moving and walking, At its severest form, this disorder can lead to complete immobility and a person being wheelchair bound.

Stiff leg syndrome (SLS) falls in the spectrum SPS and is even more rare. It is where only one leg is affected. But it can be just as debilitating.  Recurrent seizures, both grand mal and focal are common and can be just as distressing as the muscle stiffness and spasms since most common seizure medications do not work to prevent these life altering seizures.

SLS is an autoimmune disorder. Typically, our body’s immune system creates things called antibodies to attack viruses, bacteria and all things foreign to prevent sickness and disease. In autoimmune disorders, however, a person’s immune system make antibodies that is wired to attack itself and as a result causes illness.

Since these disorders are so rare, it is extremely difficult to diagnose and diagnosis is often significantly delayed, only to be discovered after tens of thousands of dollars worth of medical tests and procedures such as CT and MRI scans, EEGs and EMGs, and spinal taps along with repeat hospitalizations.

Patients that suffer from this disorder require specialized care from multiple doctors at a large medical and research center. Treatment involves expensive medications that treat and prevent seizures, sedatives and anti-spasm medications and intravenous infusion of immunoglobulin (IVIG) to counteract the bad autoantibodies.

SPS was discovered at the Mayo Clinic in the 1950s.  Again, it is extremely rare. Between the years 2000 and 2009 only 119 cases were identified in the United States.  It’s almost unheard of to find a case affecting a child. For this reason, nearly all cases are referred to the Mayo Clinic in Minnesota.

Ma’Koi’s Story:

Now that he had this rare diagnosis, his doctors feel that he should be referred to the Mayo Clinic for more specialized care. Meanwhile, here in Grand Rapids, he requires hospitalization once a week to undergo IVIG infusions. His doctors have arranged that these treatments occur on the weekend so that he can continue to attend school and feel as normal as possible.

Journey to the Mayo Clinic:

Ma’Koi has an appointment at the Mayo Clinic in Rochester, Minnesota this October and will need to be admitted for one week. He will likely require multiple visits to Minnesota over the course of the year. One can imagine the expense involved in traveling to another state for medical care and being responsible for travel, food and lodging. This doesn’t include the missed wages that his mother will encounter as she will need to temporarily close down her independently operated hair salon. The Robinson Family is asking for your financial support and prayers. By faith we do believe that Ma’Koi’s condition can be treated with the help of the right medical specialists and that he can lead a happy and healthy life. The funds raised by this Gofundme account will assist with the monetary demands in the fight for Ma’Koi’s healing. Join the fight! Please give and share amongst friends and family on social media!