Jude’s Story

Our son, Jude Robert Phillips, was born in May 2024—six weeks early and already a fighter. His birth was nothing like we expected. I (Morgan) developed severe preeclampsia and HELLP syndrome at 34 weeks and was rushed into an emergency c-section. I spent the first three days of Jude’s life in the ICU while he fought for his life in the NICU. It was two weeks before we finally went home as a family. And just when we thought the worst was behind us, we got the news.

Jude’s newborn screen had come back abnormal for X-linked adrenoleukodystrophy, or ALD. The neonatologist told us it was the first time they’d ever seen a positive result for ALD at our hospital. I was sure it had to be a mistake. After everything we’d just been through, how could there be more?

But it wasn’t a mistake. Jude's diagnosis was confirmed through follow-up testing and, in a moment, our lives changed forever.

Learning to Live with the Unknown 

Thankfully, because of newborn screening, we found out early. Jude currently shows no symptoms, and every test so far has been normal. But we live in a constant state of “watch and wait.” Every three months indefinitely, he has blood drawn to monitor his adrenal function. And every year of his life, he’ll undergo an MRI to detect early signs of brain changes. He’s already received tissue typing in case a bone marrow transplant becomes necessary.

This journey is hard—emotionally, logistically, financially. Managing appointments, specialist visits, and the anxiety that surrounds each test result is exhausting; seeing Jude in pain during his testing is heart breaking, but we are so thankful for the families that have faced this journey before us and identified how important this surveillance is.

Family Impact

After Jude’s diagnosis, we discovered that both my mother and I are carriers of ALD. My mom, now in her 60s, suffers many symptoms of adrenomyeloneuropathy, the adult-onset form of ALD that affects women. Her quality of life has been deeply impacted. I show no symptoms yet but knowing what may lie ahead is daunting. The guilt she and I have both felt is profound. As a mother, there’s no pain like feeling that you caused something harmful to happen to your child.

I used to dream of having many children and of adopting. Of having a bustling, joy-filled household. That vision has changed. Any biological child I had would be at risk, and adoption feels out of reach when we don’t know what Jude's future will look like. If he ever needs a transplant, we could be living in the hospital for months.

And so, we focus on the now. On every smile, every snuggle, every silly sound. I think often of a quiet moment Jude and I shared in the early weeks of his life, rocking him in his nursery. I started singing “You Are My Sunshine” to him, and as I said the words, “Please don’t take my sunshine away,” I broke down sobbing. It felt less like I was singing my baby to sleep and more like I was pleading with God. With science. With Jude.

Why Research Matters

Jude’s story is just one of many, but ALD is a rare disease, affecting just 1 in 17,000 people, and that means research funding is limited. Foundations like Will to Cure ALD are essential—instead of rallying around one child’s journey, Will to Cure ALD is working to help every boy, every family, and every woman impacted by this condition.

More research means more answers. Not just for Jude, but for the next baby born with ALD. For the next mother. For the next family.

How You Can Help

We hope Jude’s story has touched your heart and that you’ll consider making a donation to fund ALD research. As is the case with many rare diseases, the current research landscape for ALD is underfunded; it is often the combined efforts of individual donors that make the difference necessary to achieve breakthroughs in diseases like Jude’s.

Your donation could lead to better treatments. Earlier interventions. A cure. It could help save our sunshine—and so many others.

With hope,

Morgan and Stephen Phillips