What We Need - Paul Somerset

May 12, 2020

What Impact has Covid19 had on our family? My name is Paul Somerset and my husband and middle child have degenerative motor-neuron disorder as well as a brain malformation, and is just finishing four and half years of cancer treatment. Covid19 has stalled his treatments for four months. This is time has shortened his life. We live in the small town of Lewes, Delaware. Weekly we have to drive the length of our state for him to spend the night at the hospital. The Covid19 emergency means that this trip is no longer possible. We participate in tele-medicine but as he is the first person ever diagnosed with his specific motor-neuron disorder and the medical staff needs more hands-on appointment. With his compromised immune system this cannot happen. What this means is that every day the pandemic continues he is losing time exponentially at the end of his life. It means that he is not getting, PT, OT, and Speech. I means that he is losing functionality which he will never regain. My other fear is that our doctors are missing milestones in his degeneration. It is hard to watch your child fade, but our one constant hope has been that in his struggle other children can be helped in the future. So much of this work is now in jeopardy. Thank you for the work you are doing on the fourth relief package for Covid19, and we and our extended family and friends support you. I would like to know more about how families with disabled children are being helped in this package. Also, thank you for the time you are spending on supporting our family. I hope you and yours are well and stay that way.