Eli was born in March of 2016 as the first grandkid on both sides of the family, and boy were we all excited. After a few signs of stunted development, Eli was hospitalized at six months old in order to complete a number of tests. After no conclusions were reached, the Petermans were sent home to wait for the genetic test results. About a month later, Eli spiked a fever and began having seizures, which led him back to the hospital. After three long days of seizures, Eli lost his vision, his ability to eat by mouth, and all muscle control of his body. Our little boy who was sitting up, loving banana purees, and interacting with us just a week before could no longer do so.
Two days before Thanksgiving, we received the genetic test results. At eight months old, Eli was diagnosed with a very rare form of Limb-Girdle Muscular Dystrophy called Type 2S, which is behaving more like a mitochondrial disorder in Eli. Very few cases of this type have ever been documented, as it is a relatively new discovery, and the symptoms and trajectories among patients vary dramatically. So much more research is needed.
Since Eli was diagnosed, he has faced countless challenges and hospitalizations (literally, we've lost count). In the fall of 2017, we received the devastating news that Eli’s diagnosis was also effecting his brain growth and development. His brain atrophy is progressing faster than expected. Eli requires daily respiratory treatments and medications for seizure prevention, pain management, and reflux. His GI system has gradually deteriorated. Eli started with a NG tube, then moved to a G tube, then to a GJ tube, and now receives all of his nutrition through a PICC line. The PICC line has come with its own host of complications, from hospitalizations for infections to ER visits to clear occlusions.
TLDR: Every day Eli struggles with basic functions. Every day, he fights to live another. Every day, he is beating odds. Because of the rarity of his disease, every day is filled with unknowns and unanswered questions. But despite this, not a day goes by that Eli doesn’t show us his massive smile, melt some hearts with his killer comb-over, and make us all laugh watching his signature Irish jig.
Eli is an inspiration to everyone who hears his story. Which is where Team Eli comes in! Raising money to support life-saving research being funded by the MDA while sharing Eli's story is the least we can do to honor this little superhero. We won't stop till he's running with us.
Please consider being a part of our team or making a donation today. Thank you in advance for your support! It means the world to us.
#RunChi4Eli #MDStrong #BeBrave #TeamEli