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I’m reaching out with a heavy heart and hopeful spirit to share the journey my sweet g-boys, 9-year-old grandson, Malakai and 6-year-old grandson, Milo, are now facing.
Malakai and Milo have recently been diagnosed with X-linked adrenoleukodystrophy (ALD)—a rare and serious genetic disorder that affects the brain and adrenal glands. This condition prevents the body from breaking down certain fats, which leads to a buildup that damages the protective covering (myelin) of nerve cells in the brain. It’s a life-altering diagnosis, but thankfully, it was caught early.
Both Malakai and Milo are bright, joyful, and resilient little boys who light up every room they enter. They love to laugh, play, and explore the world with wonder. Jess and Jared (and me) are doing everything they can to ensure they continue to thrive, and are working closely with an amazing team of specialists to find the best possible treatment plan for Malakai and Milo.
As you can imagine, this journey comes with many challenges—emotional, physical, and financial. That’s why I’ve created this GoFundMe on behalf of Malakai and Milo’s family. The funds raised will help cover: medical treatments and therapies, travel to and from specialists and hospitals, lodging and meals during extended stays, and any other unexpected expenses that arise along the way.
We are overwhelmed, but we are not alone. Your support—whether through donations, prayers, or simply sharing Malakai and Milo’s story—means the world to us. Every bit helps us stay strong and focused on what matters most: giving them the best chance at a full and thriving life.
Thank you from the bottom of my heart for walking this path with us.
With love and gratitude,
Kristen (aka Frams)
Additional information:
Learn More About X-ALD (Adrenoleukodystrophy)
Many of you have asked about Malakai and Milo’s diagnosis and what X-ALD means. We wanted to share some helpful resources for anyone who would like to better understand this rare genetic disorder and the importance of awareness, support, and newborn screening.
What is ALD?
ALD Alliance offers a great overview of the disorder:
ALD Alliance – What is ALD? (https://www.aldalliance.org/what-is-ald.html )
Newborn Screening
Early detection is critical. ALD Alliance is working with families, medical professionals, and legislators to expand newborn screening for ALD across the U.S. Each state adopts screening at a different pace, but progress is being made thanks to these efforts:
ALD Alliance – Newborn Screening (https://www.aldalliance.org/newborn-screening.html )
You can also find more information and resources through ALD Connect:
ALD Connect – What is ALD? (https://aldconnect.org/what-is-ald/ )
WE ARE MALAKAI AND MILO STRONG!!
this is the video Jess made for his 9th birthday in May … love seeing the sweet smiles since day one! I am confident we Will have many more beautiful memories to add to this video!
Co-organizers4
