Hi, our names are Edicson and Michelle and we are fundraising for our son Mateo.

In February 2024, our world and lives changed in an instant and forever.

Up to that time, our son Mateo was a completely vibrant and incredibly smart boy. We never could have suspected that he had any medical condition or that his health was compromised, especially with something so serious and devastating as Adrenoleukodystrophy (ALD).

Childhood cerebral ALD is a rare neurodegenerative disorder and the most severe form of the disease, typically striking boys between 4 and 10 years old. It causes rapid cognitive decline, motor impairment, visual and auditory deficits, seizures, and progresses quickly toward severe disability and premature death.

To stop the rapid progression of this aggressive condition, Mateo underwent a Bone Marrow Transplant (BMT) in August 2024. While the transplant was necessary to save his life, the combination of the disease itself and the intense treatment accelerated the disease.

Today, Mateo is no longer able to walk or talk, he has lost his vision, his speech, his hearing, all control of his limbs and can no longer support his own head. He is unable to eat or swallow properly and receives all of his nutrition, liquids, and medications through a PEG feeding tube.

Seeing our active, bright little boy lose all of his functioning before our eyes, ending up in a wheelchair, there are no words to describe, it has been an absolutely devastating and heartbreaking experience for us, his brother and sister, and all of our family.

We refuse to stop fighting for Mateo’s quality of life. We want to give him the best possible chance to get better and, hopefully, one day regain his functions. Last year, we learned about an advanced technology called REAC (Radio Electric Asymmetric Conveyer) therapy in Florence, Italy. This therapy is not available here in Australia.

However, it has been used to help other children diagnosed with ALD. Parents of these children have reported encouraging clinical benefits, including reductions in seizures, reductions in painful muscle spasticity, improvements in swallowing, better motor performance, improved physical control, and cognitive and emotional responsiveness. Through our research, this is the only treatment we have found that has been used with some success for advanced ALD boys like Mateo. Any improvement that Mateo can get from this is a big gain for him.

To give Mateo this chance, we must travel from Australia to Italy. The cost of one therapy session alone is $25,000AUD, not including travel and accommodation expenses. And one therapy session takes 8 full days to complete. We are hoping to raise funds to help us get this treatment for Mateo. Every dollar raised will go directly toward Mateo’s REAC therapy sessions.

Families of children with ALD who use REAC technology typically return for follow-up sessions every 6 months. If Mateo responds well and shows improvements, this initial trip will be the foundation for an ongoing, long-term journey to give him the best possible quality of life.

Thank you from the bottom of our hearts for your kindness, your prayers, and your generosity.

Please share Mateo's story with your community to help us bring him to Italy.