Just prior to receiving Maggie’s diagnosis in February of 2020, we knew a wheelchair was in our future, but we were not sure to what extent.  Our hope was that a diagnosis would lead to treatment and a means of improving her walking. Maybe it would only be needed temporarily? Maybe we would use it when she got tired? In any case, hope looked and felt so different then. So we found a wheelchair that could collapse down and go in the back of our van while Maggie rode in her carseat. And then we learned about MLD. And we learned that she would never walk again.

Things have changed. Her diagnosis, along with the pandemic, made it seem as though the whole world caved in on us. But slowly we have been making our way back toward daylight. One mom of a medically complex child told us that when you learn the dreams you had for your child will no longer come to be, you don’t just sit and dwell in that. You make new dreams for them. That is where we are now with Maggie - making new dreams and finding ways for her to be, as much as she can be, a normal 4-year-old. Maggie is now enrolled in a study at the University of Iowa where she receives enzyme replacement therapy to hopefully slow or stop the progression of her disease. It is not a cure, but it is hope in a new form.  She is also going to preschool and gets to be in the same class as her healthy twin brother (who is so glad that his sister is there in school with him, because he was nervous, too.) And in the midst of this, she is getting bigger. At 37 lbs, it has become difficult for us to get her in and out of her carseat. Her grandparents help us care for her. They are now in their 70s and they struggle to lift her. The process of transporting her - loading her into the van, collapsing her wheelchair, and the reverse when we make it to our destination - has become a deterrent to taking her places and allowing her to have the same opportunities as her brothers. Even attending church had become cumbersome, which was heartbreaking as I, her mother, am one of the ministers. 

Having a wheelchair accessible van would make transporting Maggie more manageable. It would also allow us to keep her involved in activities and give her a relatively normal childhood. She could easily attend worship and Wednesday night church classes. She could attend events with her brothers. Her grandparents could continue to transport her so we would not need to miss work. Finally, it would allow us to keep her in the drug trial through the University of Iowa. Our current van is in need of repair or replacement soon and we are concerned about how long it will be a reliable and safe mode of transportation for our family. Our weekly hospital visits are 250 miles round-trip. Having a van that is both safe and accessible will give Maggie access to the drug that is our one shot at giving Maggie a chance to live a longer and fuller life.