I’m Jen Martin-Cutler, proud mom to Clark, my handsome ginger son diagnosed with Pelizaeus-Merzbacher Disease (PMD) in December 2015 at 11 months old. Clark’s leukodystrophy journey began with challenges like delayed milestones, difficulty swallowing, and nystagmus, leading us to specialists at Lurie Children’s Hospital. His care team included experts in genetics, pulmonology, neurology, ENT, and a plastic surgeon, as Clark was born with a cleft lip. Clark uses a walker, wheelchair, and AFOs to support his mobility. We also work closely with his physiatrist at Marianjoy Rehabilitation Hospital to support his motor needs.
I first heard about the ULF through another PMD mom, who shared her experience attending the ULF conferences for her two boys. When she mentioned the ULF office was in DeKalb, IL, the very town we had just moved to, I thought “what are the odds!” After connecting with staff and attending conferences I soon realized the ULF community was one with open arms, building parent connections, and putting doctors and families face to face.
Being part of a group where families without diagnoses, and those with other forms of leukodystrophy, were welcomed and supported was so meaningful. At the conferences I not only hear other stories but have opportunities to get hands-on advice about special needs trusts, adaptive equipment, therapy ideas, upcoming trials, stretching and mobility topics, sensory needs, and the list goes on.
Supporting the ULF is my way of expressing gratitude and ensuring that other families navigating the complexities of rare disease feel seen and supported in addition to reaching a diverse range of families with very complex cases, so that no one feels forgotten or ignored given our rarity. Through grassroots fundraising, I’ve had the chance to not only raise awareness about rare diseases but also celebrate the incredible work ULF does for families with even the most unique and challenging cases. If you are interested in attending one of these fundraisers for ULF, check out on the ULF website and Facebook pages for future fundraisers here in Illinois!