SIOD: Schimke Immuno-osseous Dysplasia

Inspiring Others Through Pain

By Amber Rogers and Danita Groce

Sam Foy is a 13-year-old Kernersville native who needs the of support of his local community. Sam had been very active his entire childhood including hiking, swimming and playing competitive sports, but in early 2022 he started to complain of hip pain and was no longer able to do many of the things we all take for granted. “At first, I thought it was just growing pains. He was at the age where he would be having major growth spurts, so I chalked it up to that,” said Sam’s mom, April Sayre. As the pain worsened it was apparent Sam had something else going on, so they sought medical attention through their family chiropractor, Dr. Cliff Nikels of Kernersville. “Dr. Nikels immediately knew there was a bigger issue and sent Sam for x-rays and got the ball rolling to his eventual diagnosis,” April shared. “We are so thankful he recognized this so quickly because so many other SIOD children suffer much longer.” 

After two months of doctors’ appointments, tests, scans, and genetic testing, Sam was diagnosed with an extremely rare genetic disease called Schimke Immuno-osseous Dysplasia (SIOD) which causes a short life span due to its devastating effects on the kidneys. By this time, Sam was often in excruciating pain. It is estimated that only 1 in every 1 to 3 million children are diagnosed with this condition in the United States. Sam is actually #10 in the United States. SIOD is a condition characterized by short stature, kidney disease, and a weakened immune system.

Sam suffers with hip dysplasia and is no longer able to walk unassisted. He is in need of a hip replacement. We are hopeful that will happen soon and that it will relieve much of his pain thereby making his day-to-day tasks more tolerable. He could need a kidney transplant in the future. Many doctors have never even heard of SIOD and there are only two doctors in the United States that have treated it, making it expensive and difficult from a time and logistics aspect to get to the specialists, often in another state. Research on treatments is still in very early stages which makes this even more difficult for Sam and his family as they are almost blindly navigating this journey. Parents in such situations can be under extreme stress trying to hold down a job to provide for their family while finding it necessary to take considerable time away from work to get their child to numerous appointments, yet also trying to keep some sense of normalcy within their family unit. Thankfully there are support groups which include the very small community of parents of other children with SIOD. 

Sam is an old soul that is sweet, kind, and funny. He loves his younger brother, Luke, who has been an encouragement to Sam and April throughout this process. Luke carries the genetic marker for SIOD as well, but it will be expressed differently and could be a concern for his children in the future. Sam loves people. Early in his diagnosis, in the midst of a painful episode, he told his mom, “I think God might want me to be an inspiration, but I don’t know if I can.”

We want to help Sam inspire others by raising awareness of SIOD and funds to contribute toward finding a cure for this devastating disease. For Sam, in particular, we want to raise more funds to get a special tub for him to soak in to help with his pain. We appreciate so much the assistance already received with certain equipment from the Shepherd’s Center and an organization which built a ramp for him to enter his home more easily. There are plans in the works for a fund-raising walk later this year, the sale of t-shirts and bracelets for awareness, and an online auction of items with a way to make a direct donation.

If you would like to donate to help Sam, please visit  You can participate in an auction for exquisite jewelry or do a direction donation. All proceeds go straight to Sam and his family as they navigate this difficult journey.

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