07/09/2025
🙏🩵 We are reaching out for your prayers and support.
Please share Leo’s story and consider making a donation to make a difference in his life: https://gofund.me/0239a9b1a
By standing with his family, we can offer encouragement and hope every step of the way. Connect with Leo on Facebook: facebook.com/profile.php?id=61580374141044
Your support to contribute is truly appreciated 🩵
ℹ️ Understanding Leo’s Conditions - Phelan-McDermid Syndrome (PMS) & Metachromatic Leukodystrophy (MLD)
🧬 Phelan-McDermid Syndrome is a rare genetic condition caused by a missing piece (deletion) in chromosome 22. This tiny change has a big impact on how the brain and body develop.
Children with PMS often experience:
• Developmental delays – slower to reach milestones like sitting, standing or walking.
• Low muscle tone (hypotonia) – making everyday movements difficult.
• Feeding and swallowing challenges – sometimes needing special diets or support.
• Speech and communication delays – many children are non-verbal or struggle to talk.
• Increased risk of seizures and autism spectrum traits.
Doctors have explained that many children with PMS may never live independently as adults, which is heartbreaking news for any family to hear.
For Leo, PMS means that at 16 months old, he can only sit up briefly with support. He cannot yet sit independently, stand or walk. He requires ongoing physiotherapy, speech therapy, occupational therapy and dietician support to give him even the smallest chance at progress.
🧬 Metachromatic Leukodystrophy (MLD) another rare genetic disorder. MLD is a progressive disease that damages the protective covering around nerves in the brain and body.
This leads to children slowly losing skills they have already learned, things like:
• Rapid loss of previously learned skills
• No longer being able to walk
• Losing the ability to sit independently
• Difficulty eating and drinking (including swallowing water)
• Progressive decline in speech and understanding
• Seizures and increasing muscle weakness
• Over time, MLD causes severe physical and mental decline, often shortening life expectancy.
For families, the diagnosis is devastating. It means watching their child regress while knowing there is currently no cure. Treatments focus only on easing symptoms and slowing progression in some cases.
The uncertainty for Leo has taken a heavy emotional toll on his parents Phil and Georgina and sibling, older brother Isaiah who are doing everything possible to give him the care he needs while living with the unknown.
🙏 Share Leo’s story and Donate Today https://gofund.me/7219997ec 💙
With gratitude,
Phil, Georgina & Isaiah
