Lilly Lou’s Story – From Her Mom, LauraLee Gray (Wade’s cousin)
Our sweet Lillian Louise Gray — everyone calls her Lilly Lou — is a bright, sassy, and fiercely independent 3-year-old (born in 2022) who lights up every room with her giggles and determination.
At 18 months, when Lilly Lou hadn’t yet met her walking milestones, her pediatrician recommended an MRI. Six months later, after bloodwork and genetic testing, we received the diagnosis: Pelizaeus-Merzbacher-like disease (PMLD), also known as hypomyelinating leukodystrophy 2. This ultra-rare genetic disorder is caused by mutations in the GJC2 gene that Lilly inherited in an autosomal recessive way — neither her dad Michael nor I show symptoms because we each carry one functioning copy of the gene.
PMLD affects the formation of myelin in the brain and central nervous system. It started with low muscle tone (hypotonia) and involuntary eye movements (nystagmus). As Lilly grows, muscle stiffness (spasticity) and other challenges like ataxia are expected to progress. The doctors have told us that symptoms often worsen around adolescence, which is why we are racing against time.Despite everything, Lilly Lou is making incredible progress! She attends physical therapy (PT) and occupational therapy (OT) regularly. She gets around beautifully in her walker and has even taken independent steps on her own. Every milestone is a testament to her strong spirit — we are in constant awe of our girl and so incredibly proud of her.
How This Fundraiser Began
Last year, our generous cousin Wade Rackley and his wonderful wife Emma made an incredibly kind decision: instead of traditional wedding gifts for their July 2025 celebration, they asked friends and family to donate to Lilly Lou’s future. Their selfless act brought immediate awareness to PMLD and gave us the most meaningful jump-start imaginable. We will forever be grateful to Wade and Emma — they turned their joy into hope for Lilly Lou, and the first donations to this fund came directly from their generosity and love.
Today – An Ongoing Fund for Lilly Lou
Now that the wedding is behind us, we are keeping this GoFundMe active as a dedicated, ongoing fundraiser specifically for Lilly Lou. Donations here go directly to her — not to the nonprofit For the Love of Lilly Lou, Inc. (which supports broader research and other families).
These funds will help us prepare for the future in two key ways:
- Genetic therapy — When a safe and effective therapy targeting GJC2 mutations becomes available (preclinical work is promising, and we pray it arrives soon), the costs are expected to be extremely high — often millions of dollars for one-time gene therapies in rare diseases. We want to be ready.
- Daily support and quality of life — Equipment, adaptive devices, mobility aids, therapy extras, home modifications, or anything else that helps Lilly Lou thrive right now and in the years ahead.
We are filled with hope because of the rapid advances in genetic therapies for leukodystrophies. Lilly Lou has an outstanding medical team, and we refuse to let this diagnosis define her future. With your help, we can give her the best possible chance at stability, improved mobility, and a brighter tomorrow.
How You Can Help
Every donation — no matter the size — brings us closer to being ready when the breakthrough comes. Sharing this page also helps spread awareness about PMLD so more families feel supported and more researchers are inspired to act.From the bottom of our hearts, thank you to Wade and Emma for planting this seed of love and generosity. And thank you to every single person who chooses to stand with Lilly Lou today and in the future.With eternal gratitude and unwavering hope,
Michael, LauraLee, and our warrior Lilly Lou Gray