Help the McMillans Beat ALD

Please consider supporting 11-year-old Aaron and his family as he undergoes a bone marrow transplant with the goal of beating ALD. Your support will give the McMillans a huge relief and allow them to focus on what is most important right now–helping Aaron get better.

In 2016 the McMillan family received a diagnosis that no one ever wants to hear. In Deana’s own words, “When your child is diagnosed with a life-threatening disease, there are a lot of unknowns. You feel lost, you cry a lot, and you don’t know what the future holds. There are lots of questions.” The feelings of defeat, terror, and hopelessness quickly shifted to ones of determination to learn as much as possible, to connect to specialists, and to figure out how to walk this new path together for the health and life of their little boy.

How It Started

Aaron was just five years old when he was diagnosed with Adrenoleukodystrophy (ALD). His diagnosis was discovered after he went into an adrenal crisis following his 5-year immunizations. At the time of diagnosis, Aaron was just one of two boys in the state of Kansas who had been diagnosed with ALD. In other words, this is rare. Very rare. He was also diagnosed with Adrenal Insufficiency (AI). These diagnoses can be life-ending. The protocol for care involves MRIs every six months for preventative catching of early signs. It involves steroid dosing to help with the adrenal insufficiency. It involves many doctors, medical jargon, unexpected trips to the hospital, and trips out of state to meet with specialists. Up until recently, Aaron’s treatments have been successful in helping him remain healthy and active.

Today

Today, Aaron is a vibrant 11-year-old boy in 5th grade who has a love for many things such as reading, brain puzzles, animals, science and Legos. He wears a big smile with an infectious laugh. He’s referred to as a superhero.

The Learning Curve

According to ALD Connect: Adrenoleukodystrophy (ALD) is an X-linked disease that is caused by an underlying genetic mutation in the ABCD1 gene, which affects the body’s ability to create the protein that helps the process of breaking down very long–chain fatty acids (VLCFAs). The saturated VLCFAs build up in the brain, nervous system, and adrenal gland and eventually destroy the myelin sheath that surrounds the nerves. ALD affects approximately 1 in 17,000 people worldwide. https://aldconnect.org/what-is-ald/

After the McMillans learned more about Aaron’s diagnosis, they were given some hope by starting Aaron on a special low-fat diet and Lorenzo’s Oil, a combination known for assisting with normalizing the accumulation of the very long-chain fatty acids to help slow down the progression of ALD. Recently, however, the McMillan family was told the disease has now progressed into the cerebral form, despite all their efforts.

Next Steps: Please Consider Helping

Aaron and his family are now facing many unknowns as Aaron undergoes a bone marrow transplant in Minneapolis, MN. This procedure will hopefully stop the progression of the disease in his brain. It is a long road of many months ahead. The family will be living in two locations for most of this period of time. Deana will stay in MN with Aaron where they will live for the next 4-5 months while Aaron receives the transplant and recovers. Travis will initially travel with them but is only able to stay for a few short weeks before returning to Wichita to work. We ask that you please consider supporting Aaron and his family, as the financial strain is very real. The medical expenses are mostly covered through insurance, but the loss of a working income, the costs of living in two places, the costs of traveling back and forth for the family to see each other, and so many unknowns will all add up quickly. Your support will allow the McMillans to cover unexpected costs and focus on what is most important right now–helping Aaron get better.

Side note of who we are: Organizers of this GoFundMe are two of Deana’s friends - one lifelong friend from childhood and one friend who has shared knowledge and experience and helped guide their path of being ALD parents.