Support Mavryck's Fight Against ALD

Our sweet, six-year-old nephew, Mavryck, was recently diagnosed with X-Linked Adrenoleukodystrophy (ALD), a rare genetic brain disease affecting the nervous system and adrenal glands. This is a heartbreaking diagnosis for Mavryck and his family as there is no cure for ALD - but there are treatments available that may help slow the progression of the disease if started early.

Time is everything with this diagnosis. Nikki and Garrett (Mavryck’s parents) have dropped everything and are already traveling cross-country to seek out the help of specialists who can treat ALD. They recently had Mavryck assessed in Philadelphia and received his Loes score. For those unfamiliar, the Loes score is a way to measure how much the ALD has affected the brain. A lower score means less progression, and catching it early is critical.

Mav’s Loes score came back as a 14 from Philadelphia. It is lower than what Little Rock scored, but is still considered advanced. Right now, with this score, the only treatment option available is a bone marrow transplant (BMT). This is the best chance to hopefully slow the progression of ALD and give him the best quality of life possible. He will have to go through Chemo for this process and this disease could still progress during the waiting period for the BMT to start hopefully working.

Mav’s parents received a call this week that as of right now in the database for the BMT there are SEVERAL 100% matches - finally good news!

However, given the complexity of his case and this specific score, the only center currently able to take him for transplant is Minneapolis. This has been hard for the family to process, as they will need to temporarily relocate to Minneapolis for treatment and aftercare, leaving behind their home, support system, and jobs. Once admitted, Mavryck will have a long road ahead of him. They will be required to stay a minimum of 100 days once the BMT is complete.

They are also battling with insurance and “out of network” struggles while trying to get Mav treated ASAP, so most of the upfront costs are coming out of pocket.

We are humbly asking the community to come together and join our fight against Adrenoleukodystrophy. We believe this is a crucial time that the family should be able to stay together, so we want to relieve some of the burden of the medical and travel expenses so that the family can focus on processing this diagnosis and supporting Mavryck.

Thank you to everyone who has shown the family support during this time. We all love Mavryck and it’s clear so many of you do too

Follow Mavryck Strong on Facebook for updates from Nikki & Garrett