Our precious grandson Joshua was born six weeks early on December 27, 2017. He weighed just 4 lbs. 6 oz. and was 16.5 in. long. Joshua’s mom, our daughter, Kelly, was hospitalized for premature labor, but when Joshy was born a month later something wasn’t right. He was floppy, had a very weak cry, didn’t want to eat, and was very sleepy. Joshua was diagnosed with Prader-Willi syndrome at 1 week old.
None of us had ever heard of PWS. I frantically Googled everything I could about it. Everything I read about the syndrome was devastating! I felt as though we were living a nightmare and there wasn’t anything I could do to make it go away. All I coulddo was be present and support Kelly and our son-in-law, Johnny, any way I could. My heart broke for them and our angel Joshua. I was scared. I wondered, “How could this happen to our precious grandson?” I became angry with God and I started to lose my faith. With the help of a dear friend, though, I was able to regain my faith and find hope again. I prayed hard.
Soon after, I sought help with PWSA (USA). The staff was very helpful, supportive, and encouraging. They sent us a packet of information called the “Package of Hope,” and through them I found a PWS Grandparent support group on Facebook (This is a wonderful group of caring people!). Seeing what other babies with PWS have accomplished gave me hope. It was so good to know we weren’t alone in this. I have learned so much from PWSA (USA) and have found much encouraging information. Things don’t seem as devastating as when Joshua was first diagnosed.
We don’t know what the future holds, but for now our sweet Joshy is doing very well with the help of growth hormone, and physical, occupational, and speech therapies. I know in my heart Joshua will be ok. He is so loved, and his wonderful parents have so much support…How could he not be ok? There is hope on the horizon! I know it won’t always be easy and I do worry a lot. There will be tough days. But what I’ve learned from PWSA (USA) and Prader-Willi research into new treatments is that the future looks bright for our Joshua and all others with PWS!
I’m so happy with how far our superman Joshua has come since his diagnosis and I am so very proud of his amazing parents for all they are doing to make Joshy’s life the BEST it can be…They amaze me with their strength and Joshy amazes me with how hard he works! Joshua’s brother, JD, is amazing too. Just 3 years old, but he is so good with Joshy! JD loves Joshua so much and cares for him and watches over him always. I can see in their faces how much they love each other, and it warms my heart. Joshua is one lucky baby boy!
Joshua has brought so much joy to our lives. He is such a happy baby and truly is a miracle and our blessing. I wouldn’t trade our sweet angel for anything in the world…God has truly blessed us with him!
With the help of PWSA (USA) my perspective has changed dramatically since Joshua’s diagnosis. I am so thankful for the support, encouragement, and hope PWSA (USA) has given us, and for wonderful people like Diane Seely who truly care…And for the PWS grandparent’s group! I truly believe great things are coming for our Joshua and all others with PWS!
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.
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.
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.
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.
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.