Luke was born February 12, 2007, the seventh of our beautiful children. At four days old we received a phone call that Luke’s new born screening was showing an inborn error. So we were sent to Johns Hopkins that same day where we learned Luke had PKU, or phenylketonuria. Being the 7th of our children, we never expected this as none of his siblings have been affected. Luke has since been also diagnosed with Chiari malformation, Ehlers Danlos syndrome and osteoporosis.
Luke is currently waiting for a wheelchair as he has fractured bones over thirty times in the last two years due to low bone density. Ehlers Danlos (EDS) causes fractures/fissures in the growth plate area. The new geneticist we recently went to said that a small percentage of EDS children will fracture multiple times with no known cause.
Luke’s brothers~ Skeeter and Russell, and sister Deanna, all also have Chiari malformation. Skeeter has had 5 brain surgeries, Deanna a decompression surgery last January, and Russell had his first surgery this past August. Russell is also affected by EDS and syringomyelia (a fluid filled cyst within the spinal canal).
We are blessed to have a large family and we were chosen to take care of such special children. While some of the children are affected by these rare diseases they all look out for one another and especially Luke. He is very precious to them and with his PKU his diet is very strict and a metabolic formula must be consumed each day. They are all very careful and watch him closely.
So as you can see our home is full of adventure and needs. We are truly blessed and have an overwhelming sense of love and protection. They may all have rare diseases, but the diseases don’t have them.