Rowan's wish to go to Disney World

Our daughter, Rowan, received a devastating diagnosis in Fall 2024 at 27 months old. Our normal, happy, sweet child started losing her balance and struggling with motor skills around age 2, and after many whirlwind months of appointments and tests, we found out that she had a rapidly progressing rare and fatal neurodegenerative disease called metachromatic leukodystrophy. By the time she turned 2.5 in December, she had lost the ability to walk, could barely talk or use her hands, was eating through a g-tube, and was experiencing painful dystonia and neuropathy. Our neurologist submitted her for an "urgent" wish request, and by January, we were planning our first family trip to Orlando, including both parents, her 5yo big sister and grandma.

There were so many logistics and medical needs to work out, and we were so grateful to the Make-A-Wish team for helping us navigate these. We also really appreciated the expediency of getting this planned. Rowan was able to enjoy the trip, and we were able to make lasting memories as a family. It was a truly magical experience, and seeing the smiles on both kids' faces is something I will never forget. Soon after we returned, Rowan's abilities to laugh, talk, smile, and move on her own were lost forever. Her disease has continued to progress, although it has slowed quite a bit in recent months. Our lives and family are forever changed, and it is very challenging to travel or have meaningful experiences with Rowan. We are so grateful to have had that one last special vacation together.