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Nonprofit serves families of children with rare diseases Ryan McLaughlin, Karlee Chill and Lauren Klingenberg couldn’t have predicted how their lives would intersect. Moms of children with rare disorders, they and a dozen other women gather monthly through HopeLink at Bridgeway Church in Oklahoma City. Founded by McLaughlin in 2007, HopeLink connects, encourages and supports families whose children suffer from rare, serious and undiagnosed disorders. After McLaughlin and husband Mike’s oldest daughter, Ellie Kate, was diagnosed with Nonketotic Hyperglycinemia, an incurable genetic metabolic disorder characterized by seizures, significant developmental delays and general inability to eat, sit or walk, shortly after she was born in 2005, McLaughlin realized there were no local support groups to connect with moms facing similar situations. She longed for solidarity. “There are wonderful organizations for families of children with autism, Asperger’s, Down Syndrome, but there’s nothing specific for rare or undiagnosed diseases,” said McLaughlin. “I envisioned a welcoming, loving place that was like family where we could have support groups, speakers and social functions.” After extensive research and connecting with Oklahoma Family Network, Bridgeway Church, the Children’s Center

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Rehabilitation Hospital, SoonerStart and various doctor, rehabilitation and therapist offices, McLaughlin launched the nonprofit organization. At the monthly support groups, moms share advice on navigating daily life with special needs children. Though the diagnoses of their children are extremely varied, many symptoms are similar. “It’s amazing when we talk about new therapies or medications how many things cross paths,” said Chill. “Most of these moms don’t have an organized support group for their diagnosis or anyone local to connect with.” Mutual friends connected Chill with McLaughlin after Chill and husband Jeff’s twin boys, Logan and Griffin, were diagnosed in 2012 with Alper’s Disease, a terminal progressive neurologic disorder. The family also received a HopeLink care basket during their four month hospital stay. After a healthy infancy for both boys, the disease presented in Logan at 18 months old, and Chill attended her first HopeLink meeting after bringing him home on hospice care. “I didn’t know anyone with a child with complex medical issues, terminal issues,” said Chill. “I didn’t even know things like this existed. And then I was sitting in a room of 15 people who had children like mine.” Though each family has an extensive support network, the women agree no one can grasp their challenges and joys like other special needs families. Klingenberg met Chill through mutual friends after she and husband Sam’s son Evan was diagnosed at 6 months old with Menkes, a fatal copper deficiency

characterized by failure to thrive and deterioration of the nervous system. “I can be my total self there,” said Klingenberg. “I get input, courage and grace from other moms that have walked farther in the journey than I have, making me realize this time I have with Evan now is joyful.” McLaughlin, whose third child Lucy Belle also has NKH, finds relief in being vulnerable with the other HopeLink moms, not having to answer extensive questions about diagnoses or prognoses or put on a brave face like they do in the outside world. “We can say ‘I don’t feel strong, I don’t want to do this, I don’t want my child to be sick, It’s not fair that I have to think about funeral plans,’” said McLaughlin. The support group allows moms to discuss the breadth and depth of their emotions, but they strive to uplift each other, too. Family socials and parent’s night out events include medically-trained volunteers to provide special needs and typical children with activities and affirmation and offer parents respite. An annual retreat offers moms a weekend away. As families endure hospital stays and surgeries or honor children who have passed away, members provide each other meals, help with household chores or simply the reassurance of their presence. “It’s helpful to know your awful, horrible, indescribable experience can be helpful in some strange way to someone else,” said McLaughlin. HopeLink members have taught Klingenberg to listen to her instincts and advocate for

Profile for MetroFamily Magazine

MetroFamily Magazine February 2019  

MetroFamily Magazine February 2019