Brooks Coleman White was born on October 2, 2015. He appeared to be a healthy boy, developing normally for the first 7 weeks. About that time, though, I (Brooks’ mom) noticed that he wasn’t tracking movement as well or socially smiling as much as I remembered with my daughter. However, at seven weeks he was holding his head up very well and even rolling over, so I pushed those concerns to the side. After all, it had been a few years since my daughter was an infant.
At nine weeks old, Brooks had his first seizure in the middle of the night during a feeding. Brooks’ father and I were on the phone several times with the pediatrician on call and even sent the doctor a video of what we saw. When the seizure continued the pediatrician instructed us to head to the Emergency Room at Ronald Reagan UCLA Medical Center. Brooks’ seizure stopped on the way to the ER and Brooks appeared to be himself again. Thankfully, the video we recorded was viewed by the emergency medicine, and pediatric neurology teams. The pediatric neurologists immediately recognized the video as seizure-like behavior. Brooks was admitted and they began numerous tests to diagnose his condition, along with medications to eliminate his seizures. Within 48 hours we learned our nine week old son had leukodystrophy; likely Alexander Disease (a very rare type of leukodystrophy).
I was devastated, heartbroken and in shock. I didn’t know what leukodystrophy was nor had I heard that terminology before. I didn’t know what this meant – what would he need? What would we need? After a couple days in the hospital and no additional seizure activity noted, Brooks was discharged.
Nothing could prepare us for our journey with Brooks. My husband and I immediately turned to the internet in search of resources, others like Brooks, treatment options, and anyone that could help. We found no clinical trials for Alexander Disease and no promising treatment options. It felt like there was nothing we could do and there was very little information on what to expect. Even though there was general information on Alexander Disease, his specific GFAP gene mutation (linked to the disease) was one that had never been documented before. In meetings with his neurology team we were given estimated ranges of his lifespan, what we might expect over the next few weeks and months, and why Brooks’ unique genetic condition made it difficult for him to be eligible for clinical trials or other potential treatments. So we loved him, and we held him.
For the first few months of Brooks’ journey he was in the hospital more often than he was home, and he underwent three surgeries to help ease his symptoms. Brooks could have up to 30 seizures a day and it took a long time to find an effective combination of anti-seizure medications. Eventually we started him on a ketogenic diet after discussing it with the pediatric neurologist, and it changed our lives for the better. Brooks got to spend nearly two months at home with us because the new diet and medication regimen worked incredibly well.
Towards the end, as Brooks’ symptoms worsened, we requested hospice care. They helped us modify his eating schedule to keep him comfortable and brought in all the necessary medical equipment we needed. We continued to hold him and love him until his final moments in our arms at the hospital, on April 4th, 2016.
OUR CALL TO ACTION
Leukodystrophy is a hard journey, not only for the patient, but also for families and caregivers. Everyone’s life is changed. Throughout our journey with Brooks, I often wondered what could have been different had there been more information? What could have been different had there been a clinical trial or treatment available for his specific condition? What could have been different had I someone to relate to, to lean on – someone who understood?
The Brooks Coleman White Foundation stemmed from a place of need- a need for additional clinical trials, effective treatment options, greater public awareness, widely available services, accessible family resources. We are here to help bring these needed resources to patients and families, and bring hope to current and future individuals affected by leukodystrophy.
The highest priority of the foundation is funding research for potential treatments and cures of leukodystrophy. In partnership with medical advisors, the board of directors will assess new and ongoing research efforts around the country. We will fund promising research initiatives that hold the greatest potential to positively affect the lives of leukodystrophy patients.
Public awareness is also key to winning the battle against leukodystrophy. Given its rarity, the vast majority of the public is unaware of the disease, its severity, and impact on families. Part of our efforts will focus on raising awareness through social media, community events, and local partnerships.
Resources and services for those affected by leukodystrophy is how we will come alongside families. It shouldn’t have to be a challenge to find a support group, current clinical trials, medical resources, and information. It is our goal to help ease a families’ journey and the many decisions that they will make along the way.
It is our desire that you would join our vision in providing hope for what matters.
OUR LEADERSHIP TEAM
Our leadership team is composed of the Founder and CEO, along with the Board of Directors. Each individual has a personal tie to Brooks White, and their experience has led them to embrace the mission and vision of the foundation.