Leo needs your help to fill his little life with love, hope and strength as he battles two rare genetic conditions: Phelan-McDermid Syndrome (PMS) & Metachromatic Leukodystrophy (MLD) 🙏🏽† Then, in September 2025, Phil and Georgina’s world was shattered again when doctors informed them that Leo also has Late-Infantile Metachromatic Leukodystrophy (MLD), a devastating and life-limiting condition. Leo’s situation is heartbreakingly rare. (Scroll down to learn more about both PMS and MLD.) Phil and Georgina have two beautiful boys, Isaiah and Leonidas aka 'Leo'. As a family, they are already facing challenges that many of us may never encounter in a lifetime. Their precious little Leo, born on 10th April 2023, has endured more in his first 16 months than any child should ever have to face. Phil and Georgina are doing everything they can for Leo, but asking for financial support doesn’t come easily to them as it is completely out their comfort zone. Together, we can ease some of the financial burden and allow them to focus on what truly matters, giving Leo the care, love and hope he needs. Right now, Leo’s situation is an emergency. There are clinical trials overseas that may help slow the progression of MLD & PMS and prolong his life, but timing is critical. The longer they wait, the more his condition will decline and the less effective these treatments may be. Sadly, these opportunities come with enormous costs, so high that Phil and Georgina face the real possibility of losing everything they own to give Leo a chance. The financial strain is overwhelming and they cannot do it alone. Please join us in helping Phil and Georgina give their precious baby son every chance to live as long and as fully as possible, while holding onto the belief that miracles can happen. Your support can help him access life-prolonging treatments, vital therapies and special equipment that can improve his quality of life. Every donation, big or small, will go directly toward Leo’s ongoing care, funding potential treatment options, medical expenses, therapies, essential supplements, vitamins and minerals, medications and Leo’s everyday essentials for his overall health and well-being to give him the best quality of life possible. If you are able, please stand with us in fighting for Leo’s future. Together, we can help ease the weight on his family and give Leo the chance to experience the life he deserves. Donate today and share Leo’s story. Together, we can give him hope. Your support is apprecaited with love and gratitude. Phil, Georgina and Isaiah, who are holding onto faith, trusting in a God who heals and praying every day for a miracle.
'For with God nothing shall be impossible.' † Luke 1:37 KJV
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Understanding Leo’s Conditions
Phelan-McDermid Syndrome (PMS)
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)
On top of PMS, doctors have also tested Leo for 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.
