“Waverly is 7 years old and Oliver just turned 4. They were diagnosed almost 3 years ago with MPS IIIA, also known as Sanfilippo Syndrome. Sanfilippo Syndrome is a recessive autosomal genetic disease. Typically a child with this disorder develops normally until about age three, and then they begin to plateau and lose skills. There is no treatment or cure, and life expectancy varies. We had signed up for a weekend of respite months ago. However, when Friday arrived I was so nervous to drop her off with strangers for 48 hours. We pulled up Friday after dinner and I questioned whether we were doing the right thing. And then we walked into the front door of Jill’s House and all of my fears were removed. We had a warm greeting by members of the staff. We said our goodbyes to Waverly and off she went. We had to fill out some additional paperwork and met with the nurse to go over her care plan. I was thoroughly impressed with the plan they put together for Waverly. All of the information I had given them in the months previous during interviews and our tour, was all organized before me. All of the pertinent information was there – bathroom routines, feeding issues, choking hazard, mobility issues, etc. The staff had read over the information and were well versed in Waverly even before we arrived. I was confident that she was going to be well taken care of.
Before we left for the weekend, one of the staff members handed me a photo in a magnet frame. It was the staff of Jill’s House wearing purple ribbons on MPS Awareness Day in honor of Waverly & Oliver. How amazing is that?!
I was emailed a photo of Waverly late Friday night by the night nurse. It was a picture of Waverly and one of her buddies with a message that she was doing well. I also had a call the next day letting me know that she was having a wonderful time and really enjoyed the field trip to the horse farm. It was evident that she had a blast.
I am so thankful that Waverly had the opportunity to have a weekend of adventure. An experience that I never thought she would have. A HUGE thank you to the staff at Jill’s House, for taking such good care of my little girl.” –Shannon McNeil