Our beautiful 2-year-old son, Milo, was recently diagnosed with Metachromatic Leukodystrophy (MLD) — a rare, devastating and cruel genetic disease that destroys the nervous system. It is every parent’s worst nightmare, and it became our reality in a single moment.

Without treatment, MLD is fatal in early childhood.

There is no cure and we have been told he has 2-5 years left remaining.

Despite this heartbreaking diagnosis, Milo continues to be the bright, joyful little boy we adore. He loves playing with his big brother, Charlie. He laughs easily and says new words everyday. He brings light wherever he goes. We are doing everything humanly possible to find a treatment to slow the disease so he may experience a life outside of infancy and if that fails to be an option we will fill every day he has left with joy, comfort and family time.

MLD is relentless. Without treatment, it will take away the abilities Milo still has today — He will lose all mobility throughout his body, go blind, develop dementia and will eventually require a feeding tube to eat. Our time is precious, and our choices are urgent.

Because of how quickly this disease progresses, we need to act extremely quickly. If you contribute, you will be supporting us as we fight for the very best outcome for our son.

How the funds will be used

1. Gene Therapy (Libmeldy) — Milo’s best chance

Libmeldy is one of the only treatments in the world that has the potential to mitigate MLD symptoms before it causes irreversible brain damage. It is a miracle of modern medicine — but it is incredibly expensive and only available in limited places.

If Milo qualifies, we must move quickly. Every day matters.

2. Clinical Trials (China)

If gene therapy is not accessible to him, we are preparing to pursue clinical trials in China.

This option means uprooting our entire lives, leaving the country for months, and covering immense medical and travel costs — all in the hope of slowing the disease.

3. Giving Milo the fullest, happiest life possible

If medical options fail us, we will dedicate the funds to:

We will also use funds for medical devices, mobility supports, adaptive equipment, and anything else that Milo needs to stay comfortable and prepared as the disease progresses.

Of the options listed above and the overwhelming costs associated with them we sadly realize that we are highly unlikely to raise enough funds for option 1, but have listed it as our fundraising goal ($1,000,000 with GoFundMe starting our goal at $60,000) with hope it reaches enough hearts in time. If we aren't able to raise the funds for option 1, we will proceed with the other options and will donate any excess funds we receive to another child with MLD so they may have a fighting chance.

Why we are asking for help

MLD has placed us in a race against time — and against costs no family could ever prepare for. Our ability to work has been seriously impacted. Treatment may require months in another country. We are doing everything we can, but we cannot do this alone.

Your support — whether financial, emotional, or through sharing Milo’s story — means more than we can express. Every donation, every share, and every kind word helps us fight for our son.

From our family to yours

Thank you for reading, for caring, and for helping us give Milo a chance that he deserves. We are devastated from this diagnosis, but he is still the sweetest soul, the bravest heart, and the brightest light in our lives, and everyday he reminds us why we need to fight.

With your support, we will give him a lifetime of love — no matter how long or short that life may be.

Please help us fight for Milo.