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Sebastian was born in June 2014 and at 9 weeks old was diagnosed with a mitochondrial disease. The life expectancy of a baby with this condition is 2-3 years. There is no cure for this and it actually took 4 years to get Sebastian’s full diagnosis of Leukoencephalopathy with thalamus and brain stem involvement and high lactate and Leigh Syndrome.

Sebastian is now 9 and defies the odds daily. He is walking, eating & attending school on a daily basis. None of which we thought would ever be possible when he was 9 weeks old and given such impossible odds.

Even though Sebastian continues to do well, the reality of the situation is never far from our minds and with his complex needs there is always something going on to remind us that he is fighting hard every day to battle this disease.

Team Sebastian have joined together to help raise money for The Lily Foundation. This charity is so important in helping families whose lives have been affected by mitochondria, like us. They not only offer support through every tough step, they help fund equipment to make every day life easier and they are fighting to find a cure. The Lily Foundation give us hope.

The Lily Foundation also helped give Sebastian a younger sister. Without their funding Sebastian’s faulty gene may not have been found, getting a diagnosis in 2018 enabled us to have pre natal testing and welcome a healthy baby girl in 2020.

Please help us as we take on different challenges to raise money for this amazing charity.