Help Nolan Fight ALD

Nolan is a bright and energetic six year old boy from New Albany, Indiana, where he lives with his family. He likes to play Roblox, loves Spiderman and Star Wars, and enjoys vanilla ice cream and Oreos with his four year old sister, Lillian. After returning to in-person school in the spring of 2021, Nolan's teachers noticed a change in his academics and behavior, specifically his listening and comprehension skills. After seeing his pediatrician for hearing tests, she recommended Nolan see a pediatric neurologist. In July of 2021, after significant bloodwork and an MRI, Nolan was diagnosed with Adrenoleukodystrophy (ALD), a rare genetic condition that affects the nerves and inhibits brain function. The progression of Nolan's ALD has also caused a diagnosis of secondary Addison's disease.

The average survival rate of ALD without treatment at onset is 2 to 5 years. Nolan's doctors are uncertain of when he began exhibiting symptoms, which may impact the degree of treatment he is eligible to receive. If Nolan is eligible for intensive treatment, this would include chemotherapy to prepare for both bone marrow and stem cell transplants. Even with successful treatment, Nolan will face a lifetime of challenges because of this disease. Nolan and his family need to travel to the University of Minnesota Masonic Children's Hospital to see a specialist for evaluations and, if eligible, treatments.

Because of the rapid progression of Nolan's ALD, his parents, Hannah and Spencer, are facing insurmountable medical expenses, along with the emotional strain that accompanies this disease. Nolan's parents are desperate for Nolan to receive the care and treatment he needs, but are struggling to meet the financial demands of fighting this disease. Unfortunately, their health insurance only covers a portion of these medical expenses and none of the related travel expenses.

All funds donated will be transferred to Hannah, Nolan's mom, and will help cover Nolan's medical bills as well as the family's travel to and from Minnesota for ongoing specialist care. Thank you for taking the time to reading Nolan's story. His family appreciates any contributions you can offer. We will continue to give updates as they are available and we appreciate any support that we receive.

What is ALD?