John Frank’s Journey

In March 2023 our son, John Frank, was diagnosed with Pelizaeus-Merzbacher Disease (PMD). PMD is an extremely rare condition which affects the Central Nervous System. Currently there is no cure or standard course of treatment for PMD, which leaves us having to seek out methods to help manage symptoms and give John Frank the best quality of life possible.

In May 2023 we took John Frank to the USA to CLIMB Intensive Pediatric Therapy clinic, who specialise in a promising therapy known as DMI Intensive. Here John Frank underwent 3 hours of intensive therapy per day for 3 weeks, which resulted in some huge improvements with his movement abilities and since we have seen him grow into a happier, fun loving child who we are so proud of.

We hope, with your help, we can return to CLIMB in 2024 and continue to improve John Franks quality of life.

Over the next few months we will be running a series of fund raising events to help ease the financial burden incurred with this journey.

27th December: Under 30 vs Over 30 Football match at Derrylaughan GAC.

6th April: I (John) will be taking part in Quest Glendalough, a 59km adventure race through the Wicklow mountains, which includes running, cycling and Kayaking.

Your donations will go directly to funding John Frank’s DMI Intensive therapy sessions, travel expenses, and accommodations. We believe that with your help, we can provide our son with the best care possible and give him the opportunity to experience life more fully.

Thank you,

John & Áine