PWSA | USA Spotlight on Hope, Contributed by Michele Hampton, Mom to Jayda (living with PWS)
Jayda was born right on time weighing in at 5lbs 12oz. We were initially told she was “slow to start” and just may take some time to adjust. But, as I am sure all of us understand, she was not crying, she was asleep almost the entire time in the hospital, and we had a gut feeling something more was going on. So, as we were told to do, we went home and monitored her. A few days passed, and we noticed she was not making enough wet diapers and she simply did not look well. We went to the pediatrician and learned she had lost a significant amount of weight and there was great concern. We were quickly admitted, an NG tube was placed for nourishment, and so began our introduction to the many specialists that would help us best support our sweet baby in need.
After a week in the hospital, we had bloodwork done and she was gaining well enough to go home. We had been shared two possible diagnoses, so we spent time learning about both while we awaited the blood work results. Each day after this felt like a struggle with feeding taking long and not being easy, not to mention our own emotions regarding what was happening. During this time, I distinctly remember getting onto the PWSA | USA website and looking for stories of HOPE. I read as many as I could find and just cried. I promised myself I would take the time to write my daughter’s story to give others hope who are just beginning this journey too.
We got the call on August 11th from the geneticist sharing Jayda’s diagnosis. She continued by sharing multiple organizations and supports to connect to, but I was in complete shock during this phone call. Luckily, I was quickly contacted by Kristi Rickenbach, and she provided me the support I needed, along with meaningful, real life, personal experiences and a community to connect with. We got plugged in right away and began to get things moving in order to provide Jayda with everything she needed to thrive.
The first couple of months were tough. We enjoyed many snuggles and loved on her and every small thing she did. Her first smile was a true gift and every day she would stay awake for longer, we were thankful. Jayda continued progressing in her own timing. She rolled, then she lifted her sweet head (even with a big helmet on!), she sat up, she moved into sitting, and now she is crawling and pulling up. Next adventure, standing and taking steps!
Our favorite thing about Jayda is her smile. Her eyes light up and she brings joy to our hearts. Her mom, dad, big sis, family, and friends adore her and believe in her. Every single day the advocating and push for Jayda is worth it. Every scheduled appointment, phone call with insurance or the pharmacy, and planning with specialists and supports to establish what is next, is worth it.
To conclude, Jayda is now 18 months and she is doing so well. She has endured much at a young age and that has made her so very strong. We know struggles will come our way, but when they do, we will take it one day at a time. We love and admire Jayda and cannot wait to keep watching her move mountains, and with consistent hope, as well as God’s guidance and love, we are able to remind ourselves – everything will be okay.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.