Sam was 13 years old when he was diagnosed with SIOD.
Prior to being diagnosed with SIOD, Sam loved anything sports, hiking, running or jumping. Now we have moved into gaming because all he can do is sit comfortably. He does enjoy taking care of his pets which include Benji the chinchilla, Chip the hamster, Mango the cat and Dale the cockatiel. He treats them as we treat our babies. He is 13 so his favorite colors are anything that doesn’t bring attention to himself like gray, white or black. He likes to laugh, he is a bit of a foodie and eats rather healthy, doesn’t like taking vitamins, despises needles so this has been a real treat with all the doctor visits😁. He is a sweet boy who tells his mom he loves her all the time. His friends love him and adults love him, he seemed already old when he was born, just an old soul perhaps.
What were your thoughts when you FIRST learned that your child was diagnosed with SIOD?
What is it and how does it and will it affect his life.
Tell us briefly about the medical complications that have occurred because of SIOD
Severe painful episodes, and loss of hip and leg movement. Sounds so simplified when written down but simple this short journey has not been! I’m saying that I feel after hearing what other SIOD children have been through and go through we do have it simple.
What has your child's treatment plan looked like?
Waiting to hear back from Nemours in DE to see what they suggest in moving forward. Possible hip replacement to be able to walk again and lessen the pain.
What challenges does your family face because of SIOD?
Being able to work to provide a life and still enjoy life. Getting ample rest, is still new to us so we are learning as we go.
What would a cure mean to you and your child?
Life! A full and long life.