The NKH International family Network was founded in 1995. In that time we have grown from one family in the USA, to several hundred worldwide. To date we are still learning from each other, we are still sharing stories and our experiences and we are still welcoming new families more often than we would like. However, one thing always remains the same, and that is how this journey begins for all of us.
It all started with a mom...
Mary Lou Chandler's life with NKH started much the same as most.
Her beautiful son Jaime was diagnosed with Nonketotic Hyperglycinemia. "He will live 6 months to 1 year, he will start having seizures and then he will die and that there were no other children living with this terrible disorder."
The doctors gave her a copy of a PARAGRAPH about the disorder and sent them home to wait for him to die. When Jaime was about 3 years old, with dozens of trips in and out of the hospital, he was still alive, "they" had told her to prepare for his death, not for his LIFE! That is when she started searching for other families.
While at a doctor’s appointment
Mary was flipping through an "Exceptional Parent" magazine and saw a picture of a little girl, below her picture it said, "she has Nonketotic Hyperglycinemia, and she lives with her family in Clearwater, FLORIDA." . That was only an hour away from where Mary Lou lived!
Mary Lou wrote a letter to the magazine who forwarded it to Karen Carter and her daughter. In just a few days, Karen called her and they talked for 4 hours. The following weekend, she drove over with Jaime to visit Karen and family. They started keeping in touch regularly.
Mary Lou and Karen quickly realized that there was NO support group for this rare disorder, no way for families to find each other. So they CREATED one.
NKH International Family Network (NKHIFN) was born in 1995
They soon started finding more and more families. Along the way they met Debbie Taylor, who was also a key person for offering great support to others through the network, as well as Judy Clifford.
Mary Lou and Karen hosted their first family conference in Clearwater, FL in December of 1997.
We continue to grow
From a handful of families at the start, we now have 300+ in our network around the world.