We learned of Hugo’s diagnosis when he was 11 months old – we were devastated. We had little idea of what the future held for our little boy and our family.
Hugo is six now, and is just the sweetest boy who melts all our hearts. Hugo is a very patient and kind big brother and is in year-1 at school. He loves being around people, going for walks, cuddles and music.
We started seeing the full effects of this horrible condition earlier this year when Hugo started having seizures. Seizures, and the medication he takes, cause Hugo to be very tired and flattens his mood. It is rare now to get a cheeky smile from Hugo and he has lost the strength to pull to stand and walk with assistance.
There is a glimmer of hope, as research is currently underway to find a cure. Last time we asked for a donation it was to fund the research. Now the research is underway and we are aiming to get the medications to clinical trials. All research to date has been primarily funded through fundraising efforts from family and friends of affected children. No donation is too small, so please help us support this research effort to find a cure and help Hugo and others like him.
Hugo's Hero
2 Donors
Hugo's Star
4 Donors
Hugo's Champion
2 Donors
Hugo's Supporter
11 Donors
Hugo's Hope
5 Donors
| Name | Donation Amount | Date |
|---|---|---|
| Katie Fallowfield | $50 | September 08, 2024 |
| Cara Capewell | $100 | September 08, 2024 |
| Ian Rimes | $750 | August 15, 2024 |
| Beatrice Gomez | $500 | August 03, 2024 |
| Anonymous | $50 | July 26, 2024 |
| Anonymous | $2,000 | July 25, 2024 |
| Simba Gibson | $500 | July 25, 2024 |
| Toby and Katie Gibson | $500 | July 25, 2024 |
| Jacqui McKenzie | $250 | July 24, 2024 |
| Steve Tough | $100 | July 24, 2024 |
| Honni Procter | $50 | July 24, 2024 |
| Jennifer Chapman | $200 | July 24, 2024 |
| Maree Goeldner | $100 | July 24, 2024 |
| Lisa Lisa | $100 | July 24, 2024 |
| Sally Lindsay | $250 | July 24, 2024 |
| Anonymous | $5,000 | July 24, 2024 |
| Mary Cassidy | $50 | July 17, 2024 |
| David Jewkes | $50 | July 14, 2024 |
| Adriana Segovia | $100 | July 12, 2024 |
| Fiona Rimes | $100 | July 11, 2024 |
| Allissa Abrenica | $100 | July 11, 2024 |
| Patricia Arenas-Hughes | $100 | July 11, 2024 |
| Robyn Bruins | $100 | July 11, 2024 |
| Anonymous | $100 | July 11, 2024 |