Team Sebby
Sebby was born on 19th September 2011, a beautiful, healthy little boy. For many months, we thought he was a normal little boy, but we soon realised he wasn’t reaching milestones. After many appointments at the hospital, MRIs and muscle biopsies, we received confirmation that he had mitochondrial disease. This was absolutely devastating.
We were given the diagnosis and allowed to walk straight out of the hospital with, what we would say, a healthy child and a disease we’d never heard of. There was no advice on what was to happen next. After some research, we found The Lily Foundation. Since that day, we couldn’t have been supported by a more fabulous team – like another family for us.
Sebby’s development stopped progressing and he started having seizures, losing body tone and strength, and not being able to swallow safely, so life changed. Medicine and medical equipment became the new norm.
Despite all this, his smile would light up a room; his thick dark hair and red glasses made him stand out in a crowd. Everyone who had the chance to meet him remembers him. He gave the best cuddles.
Sebby became unwell on Christmas Day 2016 and on 23rd January 2017, surrounded by his family and in his mum’s arms, we had to say goodbye. No parent should have to say goodbye to their child. Sebby is a huge part of our lives and we’ve fundraised in his memory – walks, runs, cycles and raffles to donate to The Lily Foundation.
Sebby’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
