Help for Nafari on his journey to recovery!

Our son, Nafari Williams, was an athletic mild-mannered child before the onset of the chronically severe muscle spasms. During the first week of October Nafari began to show unusual signs in his physical behavior. He began to have choppy steps in boxing practice and resisted schoolwork. Now, Nafari is an A student and loves school, so this was very strange for us and his teachers. I took him to urgent care, and they did not see a need for intervention and told me it could be mental. He already saw the school counselor weekly and I spoke with her about his changes. At home, we noticed that he no longer engaged in activities he once liked and began tripping over his feet. I then took him to the Emergency Room, and they later admitted him to the neurological floor.

After several MRI’s and no diagnosis, we have currently been in the ICU for over 90 days (about 3 months) with no relief of chronic muscle spasms. Nafari has been given some of the strongest medicine that the hospital carries. Nafari has never been in the hospital, nor has he had to go to the ER for anything in the last 10 years of his life. We are a holistic family and Nafari has been a vegetarian for his entire life, so this was something new for all of us. It has become very frustrating that we have not been able to diagnosis him and doctors have been treating his symptom of what they call “dystonia”. He has had genetic testing and mitochondria testing done and all have come back “negative”. We’ve had extensive toxicology reports completed and infectious disease rare testing done. On paper, Nafari appears healthy, however, he still suffers from severe spasms, and nothing has changed.

We are asking for contributions for medical expenses to assist us in finding a solution for our son so that he can have some type of quality of life. We must act fast to raise funds for a second opinion and to possibly relocate for treatment as he is in constant pain. We have been told that some second opinions can cost about $1,200 dollars and one of his medications that insurance does not cover will be about $2,300 a month to maintain. During a spasm his heart rate reaches 200 and we continue to pray for the integrity of his heart to avoid any other possible interventions. He has been bedridden for the past 4 months and has lost his ability to enjoy any type of activity. He is almost always sedated to avoid being in excruciating pain. The hospital we are in has done all that they can, and we are looking for formal second opinions. We are hopeful that there IS a solution for Nafari. We refuse to take what doctors have said that he will have to live with these severe muscle spasms. Donations will also go to assisting personal expenses as we have been able to stay bedside for his entire hospitalization, and we still must pay mortgage, car, and other household bills. Our family structure has been dismantled due to his unexpected illness. His siblings have had to be uprooted and relocated 6 hours away with extended family so that we could solely focus on Nafari and his treatment and recovery. We truly appreciate ANY donation that you choose to give as it is a blessing, and we also want to thank you in advance for the assistance. It is hard being transparent and showing actual footage of the pain he is in and has been suffering with. However, we also know that it must be shown to receive help outside of what we are currently receiving.