Jalen’s Journey

Jalen Waterman’s journey began with the birth of his baby brother, Kylar. Jalen was overjoyed to be the “big brother.” His parents, Kelly and Anthony, were thrilled to welcome their new beautiful baby boy.
Just as the Waterman family was settling in as a family of four, they received the devastating news that baby Kylar was identified on the Newborn Screening Test for having Adrenoleukodystrophy or ALD. Only a handful of states test for ALD, and the Waterman’s home state of New Jersey is one that does not. In Kylar’s favor was the fact that he was born in New York City. Thanks to New York State’s passing of Aidan’s Law, adding ALD to the newborn screening, the Watermans learned of this sad but vitally important information. Kylar’s older brother, Jalen, was also born in New York, but testing for ALD had not yet been put into law. Kylar was truly a miracle as knowledge is power with ALD.
ALD is a life-threatening genetic disease that severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain’s neurons—the nerve cells that allow us to think and to control our muscles. Commonly, Adrenal Insufficiency also goes along with this disease. ALD knows no racial, ethnic or demographic barriers.
After receiving this incredibly difficult news about their sweet baby boy, Kelly quickly realized that because this disease is genetic, her four year old son, Jalen, was at risk. Jalen was immediately tested, and a week later to Kelly and Anthony’s horror, Jalen, too, was diagnosed with ALD, as well as Adrenal Insufficiency. Steroid replacement was needed at this time. An MRI was quickly scheduled since Jalen was approaching the highest risk period for the childhood cerebral form of the disease. Kelly and Anthony traveled to Massachusetts General Hospital in Boston in the middle of a blizzard for Jalen to have his first MRI. Thankfully, the MRI was read as normal. Baby Kylar was a hero and a savior for his older brother. Jalen would receive the lifesaving medication for his Adrenal Insufficiency and also be monitored semi-annually with MRIs. Kelly and Anthony hoped that Jalen’s MRIs would always be normal. Unfortunately, their hopes were dashed with Jalen’s MRI this past March. A change was detected and a lesion found. That meant that Jalen had the childhood cerebral and most deadly form of ALD. Kelly and Anthony were beyond devastated. Now a plan needed to be put into place to stop the progression of the disease and save Jalen’s life.
The treatment for this childhood cerebral form of ALD is a bone marrow transplant or gene therapy. No perfect match for a bone marrow transplant was found for Jalen. Gene therapy, while still investigational, has looked so promising that the trial is closed for accrual in the United States since they are now seeking FDA approval. This means that Kelly must travel to London, England for this life saving treatment for her older son. She will leave behind her husband, Anthony, and one year old son, Kylar, for the next three to five months. Under incredible stress the Waterman family will take on the challenge of saving their son, which will surely bring about a financial burden. This is the last thing on their mind. They just want to save their sweet little boy. For this family, being apart for the duration of Jalen’s treatment, and fear of the unknown, will make the next few months the most difficult.
Kelly is my dear friend and the Watermans are a kind, loving family. Jalen is smart, energetic and full of life! While we cannot change or fix this situation for them, my hope is that we can help to ease their financial burden while they concentrate on getting the lifesaving treatment that Jalen needs.
Any help would be a blessing and so greatly appreciated. Thank you for being a part of Jalen’s journey. Please keep this five year old boy and his family in your prayers.