Kayla Hartz, the Director of Licensed Programs at Hand in Hand has started a blog titled, "SLOve Life!" which explores her sons recent diagnosis of a rare genetic disorder called Smith-Lemli-Opitz Syndrome.
About a year ago Kayla's son, Everett, was diagnosed with a rare genetic disorder called Smith-Lemli-Opitz Syndrome or SLOS. This genetic condition affects every child very differently and affects around 1 in 60,000 children. This is caused by a gene mutation in the DHCR7 gene that helps make Cholesterol in your body, by not having this it causes various developmental, intellectual delays as well as other physical features. With this diagnosis and with any kiddo it is so hard knowing what his future holds because every kiddo with this condition is so different but, Everett is such a strong willed little boy who keeps reaching his milestones and doing something different every day. They have therapists coming to Hand in Hand for OT and PT to help reach his goals. The teachers are also a great support to help with his gtube feedings and have been flexible and helpful through that process with him.
Kayla says, "When I received his diagnosis when he was just 4 months old, and saying it was hard is an understatement. We had some thoughts before hand that something just wasn’t right, but being a part of a family here at Hand in Hand was a huge help. I was able to lean on people for support and they returned so much knowledge, support and acceptance. Through this process I also started a blog just to tell his story, and hoping to help other families through their journey as well."