“Nora is going to keep you pretty busy for a while. She has an abnormality on her newborn screen, putting her at risk for a condition called MPS. I’m going to put in a STAT referral to genetics, but don’t Google it.”
These aren’t the words any mother wants to hear about her seemingly perfect two-week old daughter.
Nora was diagnosed with a rare genetic condition called MPS1, or Hurler Syndrome, when she was only three weeks old. Hurler Syndrome affects only 1 in 100,000 individuals, so there are not many hospitals that treat a large number of children with this condition. Cincinnati Children’s is one of them.
While there is no cure for MPS1, a bone marrow transplant helps prolong and give the child a better quality of life; it was also the only treatment option that would help preserve Nora’s neurocognitive function, as MPS1 destroys many different organs, including the brain. Without pursuing any treatment, Nora would likely not live past the age of 10.
Nora’s mom explains more:
While a bone marrow transplant sounded terrifying, we are so grateful for the experience and kindness of our healthcare team at Cincinnati Children’s. They are truly giving our little girl a second chance at life.
Our social worker gave us information on the Ronald McDonald House when we were first admitted for Nora’s bone marrow transplant. I had heard about the Ronald McDonald House plenty of times when I saw the donation box at a McDonald’s restaurant, but I never had any idea of the extent of the organization. I couldn’t believe that not only did the House offer a room for you to stay in, but also meals each day at absolutely no cost. It sounded too good to be true. Being from out of town, the House has been a huge blessing for our family.
At Christmas time, the House offered families the opportunity to “shop” for gifts for not only their child in the hospital, but also any children you had at home. Nora was unexpectedly transferred to the pediatric intensive care unit right before Christmas, so my plate was very full taking care of her. However, because of the House I was able to pick out several fun toys and Christmas pajamas for both Nora and my son at home. They even wrapped the gifts and everything! It was so special.
The other time I have been so thankful to have a room at the House was when Nora was originally supposed to be discharged from the hospital. The day Nora was supposed to get discharged, her condition changed and instead, she was transferred to the pediatric intensive care unit and stayed in the hospital for another 1.5 months. If we had to use other housing, we would have been stuck paying for a place we were not even using. Because we had a room at the House though, this didn’t matter – the room was there whenever we needed it and we didn’t have to worry about extra expenses for something we weren’t using. We are so thankful for this, especially because medical bills in and of themselves are a lot!
As anyone can imagine, having your child in the hospital is a very stressful and scary experience. Nora was inpatient for over five months and transferred to the pediatric intensive care unit five different times during our stay. There was more than one occasion where we truly didn’t know if we would get to bring our little girl back home with us. Because of the House though, one thing we did not have to worry about was finances. The House helped alleviate so many of the costs associated with coming from out of town for medical care: warm meals every day and a place to sleep not only during Nora’s hospital stay, but even afterwards since we have to stay within 20 minutes of the hospital for frequent follow-up appointments at the BMT clinic. They also provided a pack ‘n play for Nora to sleep in once we were discharged and even extra freezers so I could store breastmilk for her. They have so many different resources for families, it is just unbelievable.
Because of the House, our family was able to focus solely on Nora and her recovery – the House has relieved so many extra stressors for us during this time and the staff are always smiling, asking how they can do more to help.
We can’t thank you enough for allowing us to stay here – it has been such a blessing. Being able to solely focus on my daughter’s recovery (and not where we will stay after discharge, our next meal, and all the extra costs) has been a huge burden lifted off my shoulders.
I had no idea how amazing this organization is – but you better believe our family will be supporting RMH and encouraging our friends and family to do the same.
Thank you so much for helping take care of my family and little girl during this time!