This is Emma. She was born in 2007, with a rare genetic disorder called Prader-Willi syndrome. Prader-Willi is a complex genetic condition that affects many parts of the body. For many years, Emma was doing well and her parents and family had managed the syndrome with few issues.
However, in early 2020, her parents, who live in Danville, IL, noticed some changes, and Emma was rushed to the emergency room. After an examination, doctors decided that Emma needed to be transferred to OSF Children’s Hospital of Illinois in Peoria, IL, which is about 2 hours from their home.
When they arrived at OSF Children’s Hospital of Illinois, Emma’s parents learned that she was in heart failure and needed to be put in a medically induced coma. At this time, Emma’s life was hanging in the balance, and as her mom Chasity, explained, her condition changed minute to minute.
One of Emma’s nurses told Chasity about the Peoria Ronald McDonald House. After a short application process, Chasity was relieved to learn that they had a room to stay in at the House while Emma recovered. Instead of staying in the cramped PICU room, with a glass sliding door, Chasity and her family had a private suite where they could rest and recharge, without being far from Emma. As Chasity explained, the staff and volunteers at the Peoria House “think of everything and help you however they can. They even had a toothbrush and toothpaste for us, which was nice since we had left home in such a rush!”
Thankfully, Emma recovered and was able to go home, and today she is doing well. Families like Emma’s are who you help when you give a gift to RMHCCI today!