My name is Chris. My daughter, Katie, is 16 years old, and is living with Prader-Willi syndrome (PWS). PWS is a rare genetic disorder that results in a number of physical, mental, and behavioral difficulties that will last through her lifetime. In addition to being Katie’s full-time caregiver, I also manage the care of my parents.
We moved to New York State five years ago and our home is more than 75 miles from the Buffalo Medical campus. As you can imagine, the distance driving back and forth can be a nightmare. Thankfully, I have been able to stay at the Buffalo Ronald McDonald House when Katie is being treated.
Since 2020, I have stayed 47 nights at the House. Unexpectedly, I needed to stay 24 nights in a row recently because Katie had an infection. The emergency admittance caused extra angst.
The community at RMHC of WNY checking on me made me remember that I needed to take care of myself as well as Katie.
During my stays, I was treated like a king. Volunteers made meals for me and the other families in the house so I could spend as much time with Katie as possible. Thanks to the incredible stuff, my room was always clean, and they shuttled me back and forth to the hospital as many times as I needed. The staff consistently went above and beyond for me, stopping to talk with me and check in. Whatever I needed help with, they were there for me.
The Ronald McDonald Family Room (RMFR) at John R. Oishei Children’s Hospital provided daytime support. I made sure to stop at the RMFR for a treat/toy for Katie and a much-needed hot cup of coffee for myself. The RMHC hospital volunteers were always welcoming. Katie also received visits from the Hospitality Cart which provided her with a friendly face and moments of joy when I couldn’t be with her.
When Katie needs medical treatment, I know I always have a place to stay. We will be making the trip back to Buffalo in a couple of weeks for a check-up.
We plan to stop and visit our home away from home to say “hi”. RMHC of WNY has become a part of our support community.
People like you make it possible for me to stay close to my daughter when she is in the hospital. Please consider donating to this wonderful organization.
Sincerely,
Chris (Katie’s Dad)
PS – When Katie needs medical care, I know I always have a place to stay with a hot meal and friendly faces so I can focus on what matters most, Katie. Help more families like mine by donating today!