Khloe’s smile and positive spirit shine in every picture we see of her around our House. Recently, her mom, Amanda, shared just why that is the case.
“We initially came to Cincinnati for a second opinion on Khloe’s airway issues in April of 2019. She was seen by a team in what was formally known as the Upper Airway Clinic, now known as the COSA Clinic. At the time, we thought our time in Cincinnati would be just that – a second opinion and possible surgical intervention. Little did we know the level of expertise we were going to encounter. After one visit, they knew she had something more going on. The referrals started and we were back for scopes, CT’s, echos, EKG’s, sleep studies, blood work and visits with several specialties over the next year or so.
By fall of 2020, Khloe had been referred to the Neuromuscular Clinic where genetic testing revealed that she has a form of Congenital Myopathy with mitochondrial dysfunction. We finally had our “why” that I had been searching for over the last several years. I truly believe that had we not come to Cincinnati, she would have never been correctly diagnosed. Since confirming her diagnosis, the neuromuscular clinic has taken over all of her care. We went from 3-month visits to 6-month visits recently, sometimes having to make trips for testing in between clinic visits.
In Spring of 2022, we scheduled our first stay at Cincinnati’s Ronald McDonald House and have never looked back. With us living three and a half hours away and Khloe seeing as many specialty departments as she does, staying at RMH makes things SO much easier. To have access to such a safe, inviting, home-like environment means the world to me!
Khloe’s favorite part of the House is the outdoor playground, by far! She stays out there for hours when the weather is nice. The swing is her very favorite! A close runner up in her book would be the toy closet. She looks for the ticket as soon as we walk into the room. She spends a decent amount of time at the indoor play area when it’s cold outside and also enjoys the game and craft rooms when she needs to rest her body.
The biggest thing that I have noticed since we started staying at the House is that she now looks forward to our trips. Instead of being disappointed that she has to go have a test, admission, or ten-hour day in clinic, she is excited to go because that means she gets to stay at the House!
My favorite part about Ronald McDonald House is that it truly feels like home. Whether that’s making a bag of popcorn at 10 p.m. or throwing in a load of laundry before bed. The environment itself is just so wonderful. All staff members & volunteers have been nothing short of amazing. Whether it’s me asking for another trash bag or Khloe asking if they have time to take her to the toy closet when they are knee deep in check-ins, they are always happy to help with a smile on their face. I truly cannot say enough about how positive our experiences in the House have been.”
On behalf of Amanda, Khloe and all of the guest families living in our House, thank you for everything you do to support them during these difficult times.