I’ve started this fundraiser to support the family of my brother, Ed, and his wife, Erica. Just after birth, their son Christian began having seizures. After several weeks in the NICU and many tests, Christian was diagnosed with Ohtahara syndrome with a KCNQ2 gene mutation. This diagnosis occurs spontaneously and effects only a few hundred children worldwide. Ohtahara Syndrome with KCNQ2 mutation is a neurological disorder that causes seizures starting at birth and severe physical and cognitive deficits that will affect Christian's ability to crawl, walk, move his arms, grasp objects, eat, talk, see etc. Because this illness is extremely rare it has been an uphill battle from the very beginning to even find doctors who have the experience to care for Christian and out of state travel is necessary to get Christian quality care from expert physicians. There is no cure for the illness and significant supportive therapies such as occupational and physical therapy, oral motor therapy, vision therapy, and massage therapy along with a cocktail of drugs are a necessity.

Erica and Ed have continued working in order to maintain their home and health insurance while caring for Christian, who is now 5 months old and who needs round-the-clock care, in addition to caring for their other four children, one of whom is Christian's twin brother. At home, Erica is attempting to work while managing Christian’s G-tube feedings, therapies, and medications. Many trips to the doctor are also required. Christian’s care is constant, with barely twenty minutes between his needs. As you might imagine, this has an effect on the whole family, and even their 8-year-old daughter steps up to help with Christian’s care.

Erica and Ed have attempted to manage, but they have recently learned that home nursing care, as well as other supportive therapies, are unavailable through their insurance. Christian suffers from severe and painful whole body muscle spasms that cause him to scream in pain. This experience makes it impossible for the family to leave the house together. This has taken a toll on the entire family. They are in desperate need of funds to hire help or to allow one of them to quit work in order to provide the continuous full-time nursing and therapy care that Christian needs.

I know Ed and Erica are immensely grateful for the help and prayers that friends and family have already given. Their greatest wish is to spend quality time with Christian and the rest of the family. I hope that we can ease their burden. Any donation, big or small, is welcome and will be appreciated more than you can know.