This photo captures the typical joy a family experiences when welcoming home a child. Behind these photos often lie many restless nights, postpartum struggles, and a whirlwind of emotions. In our case we faced an even tougher reality: this photo was taken just days after we received a call from the pediatrician on a Friday that our son, William, had flagged for a rare condition called X-Linked Adrenoleukodystrophy (ALD).

A quick Google search will tell you that this is a fatal condition and we spent the weekend—and many months since—in disbelief, anger, feeling hopeful and then hopeless, wondering why this was happening to us and grieving that we only had four days of newborn bliss. What lay ahead was daunting. Instead of spending our time as a new family of four making joyful memories, we found ourselves at doctors offices and trying to wrap our heads around what this meant. To further add to this, William’s mom, Taylor, was also diagnosed as being a carrier of ALD.

X-ALD is a genetic condition that prevents the body from breaking down Very Long Chain Fatty Acids (VLCFAs). These acids build up over time which leads to issues with the adrenal glands and in over 90% of cases, Adrenal Insufficiency. In 35% of cases, children between the ages of 3 and 10 will develop Cerebral ALD, a fatal form of the disease that requires a bone marrow transplant or gene therapy to halt its progression. In 20% of cases this occurs as an adult and requires similar treatments. Finally, in over half of cases, the disease affects the spine, leading to mobility challenges or paralysis over time. Male patients are significantly more prone to these outcomes, but female patients can also exhibit symptoms.

For William, this means he will begin receiving brain MRI’s every six months starting at age 2 until he turns 12. After that, he will need a brain MRI every year for the rest of his life. If the doctors detect any signs of cerebral ALD, we will pursue either a bone marrow transplant or gene therapy in hope of halting the disease’s progression, as it is otherwise fatal.

As we have processed this devastating news and established a care plan, we are now determined to make a difference for William and others facing this disease. While diseases like cancer rightfully receive billions in funding every year, ALD receives only about $5 million of funding each year. Our family has already pledged funding, and we are reaching out to our network to help us make an even bigger impact in finding additional treatments for ALD. Our mission is simple: to fund breakthrough research for ALD and AMN, advance new treatments, and deepen our understanding of these diseases. We have partnered with prestigious hospitals and universities to make this happen and we deeply appreciate any support you can provide to this cause. Together we Will cure ALD.

Tyler, Taylor, Emma, and our warrior William.