About two and a half months ago (late July 2018) we began to notice some changes with our sweet, extremely agile, outdoor loving 2-year old boy. It started with simple changes as he reverted back to walking on his tiptoes, having a significant decrease in his lower extremity flexibility and a simple rash to his knees/elbows (which we thought were from a fall). We felt this might have been related to his recent growth spurt and waited for improvements. Over the next two weeks he then began to have difficulty squatting, problems getting off the floor, and trouble getting up the stairs. At this point we went to our pediatrician.
The following two weeks were a blur… He unfortunately had a rapid worsening to which he could no longer get off the floor on his own, continued weakness in his upper extremities, and more frequent falls which ultimately led to multiple X-rays, MRI’s, Labs, and two consecutive hospital stays; one at Wolfson Hospital in Jacksonville and then Nemours Hospital in Orlando.
Unfortunately, the first hospital stay (Wolfson) led us down the road of unknown without a specific diagnosis, but the presumption of a diagnosis of Muscular Dystrophy. We were shattered by not having a confirmed diagnosis or plan which ultimately led us to Orlando. We were admitted again (Nemours) by the Neuromuscular Specialist and after another round of testing plus meeting with a Rheumatologist Sturgill was given a life altering diagnosis… “Juvenile Dermatomyositis (JDM)” a rare inflammatory disease of the muscles (myositis), skin, and blood vessels that only affects about three in one million children each year. We quickly learned that this disease has several prognoses from the worse being a chronic-steadily debilitating decline (with many complications), to a flaring type (which has bouts of remission), and to the one we pray for- Remission in about 2 years (hopefully with minimal complications).
He started treatments immediately (just completed our 4th week on 9/28/18) and the first two weeks we saw rapid improvement: overall energy level increased, swelling resolved in his extremities and some initial improvement with the rash/skin discoloration. Unfortunately, in the past two weeks, Sturgill seems to have plateaued in his improvements and some aspects have regressed. He still continues to struggle getting off the floor, carrying/holding small toys/household items, and can not climb stairs without extreme assistance.
We understand that treatment has just begun and that we have a long road ahead to have him conquer this disease, but our will to fight for him is stronger than ever as we strive to ensure that we are doing everything in our power to help him live the most healthy and productive life possible. To this point, JDM is un-curable and success in long term prognosis is contingent on having an aggressive and time sensitive treatment plan in place to eliminate further breakdown of the skin and muscles.
With this in mind, we have decided to pursue secondary consulting and treatment options with the nationally renowned Boston Children’s Hospital Rheumatology team. The team at Boston Children’s Hospital is the pioneer in research, cutting edge treatment options, and clinical trials of this rare disease. We are fighting to ensure he has the best chance of a full recovery.
Never could we have imagined this chapter in our story, but we want to write a new ending. We are asking for your help in supporting Sturgill getting to Boston to seek the treatment that he so desperately needs with this time sensitive and life altering disease. We intend to use the sum of your generous donations on travel costs, lodging, and any out of network/out of pocket medical expenses associated with this trip. Any additional funds raised will be utilized for the long-term care including extensive physical therapy, daily medications, help with care for baby sister Sage and any unforeseen complications. We will also donate any unused portion to a Juvenile Dermatomyositis or Muscular Dystrophy charity. From the bottom of our hearts, thank you in advance for hearing our story and supporting our life loving little boy on his road to strength and recovery!
All of our love and hope, Sturgill Boone King and the King family.
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