Member Spotlight- Sheri

" I often say that if the second sentence the Neonatologist said to me, after "your daughter has Prader-Willi Syndrome" was "learn politics", I would have thought he was crazy. But, it might have been some of the best advice, other than "go home and love your child". Which, he did not say. In fact, he proceeded to tell me all of the things my child would not do with this diagnosis. Sadly, I hear parents of children with PWS say this over and over. That type of introduction into this life is so hurtful and harmful. I will tell you that Lyra has met every milestone; it has just been in her own time, and with a lot of hard work. Oh, how I wish we could go back and tell that doctor how amazing life is. We should not focus on the sadness and hardness. This life, having a child with a disability, is hard, but oh so rewarding. 

As amazing as my child is, and how far she has come, her future is still unknown. Prader-Willi Syndrome ranges in symptoms and severity depending on the person. A person with PWS starts life with "failure to thrive" at birth, being hooked up to all the life-saving equipment to survive, to one day having insatiable hunger. Imagine the hungriest you have ever been, but every second of the day. No matter how much you ate, and not trusting your next meal will come. Anxiety, intellectual delay, and a low metabolism all work against her. We will someday lock our cabinets, fridge, and even trash to help her feel secure, and that we can control her home, even if her mind does not feel that way. 

Prader-Willi Syndrome is a horrible disease. But, through my advocacy, I feel that I can make change. In April we received FDA approval for our very first medication for hyperphagia (that insatiable hunger feeling). Though no medication is not a one-size-fits-all all, it is a huge milestone in our community that we have one medication approved. We have other medications in clinical trials for hyperphagia that seem promising. With the approval of one medication, we are hopeful that others may follow in its footsteps. But, we did a lot of legwork on Capitol Hill, meeting state representatives all over the country for quicker FDA review times. The Promising Pathway Act and the Give Kids a Change Act, for PRV (priority review vouchers) allow for that. It does not cost our government a penny. When you have a rare disease, we don't have years to wait. We need medications NOW. Especially the families in that hyperphagia stage. 

This life is hard, and we need support. Funding support in-home will always be less expensive than an institution. My child does not belong in an institution. She is thriving at home and feels loved and safe. Parents lay it all on the line to take care of their children with a disability. I can no longer work, because she has 20 different doctors, specialists, and therapies. I have put 18,000 miles on my van since November, driving her to all of her appointments (to give you an idea). It is July! Her care is time-consuming. I do it because I love her. I gave up a career that I loved and was good at to care for her. It is a full-time job, and one that is selfless and deserving to be compensated for, which is still less than housing her in an institution. No one would care for her as well as I can. 

Sadly, her life is not entirely in my control. Everything is funded through the government. I had no idea until I had a child with a disability. 

- We need medications to cure aspects of her disease, and quicker FDA reviews and approvals

- We need to fund Medicaid and Medicaid-funded programs. As an example: waiver programs and grants. Medical equipment and supplies are expensive. 

- We need funding for public school, so she can attend school safely. Medicaid funds her therapies in school and also her 1:1 aide. Most people do not know that, or forget. 

Through advocacy in DC, we can discuss all of these things and raise awareness. 

Having a child with a disability feels isolating and helpless. I feel like I can make a change through advocacy. I will continue to show up, walk miles to hold meetings (my last advocacy day I walked almost 11 miles in one day). It is important to share our stories. Our state representative do not know that there is a Sheri Mills, who has a daughter named Lyra, living with Prader-Willi Syndrome, if we do not tell them. We cannot make connections, for them to remember my child's story and her face, if we do not show up. We help show them how to do their jobs. We tell our stories and eventually make change. We have to advocate. We have to show up. A person with a disability, their lives matter. They matter. "