Beautiful Jude was born on 15 Oct 17 and it didnt take long for us to realise that something wasnt quite right as he couldnt follow anything with his eyes and at 12 weeks old he hadnt tried to move and barely ever cried. He had an MRI scan in June 2018 and we were soon after given the devastating news that he had a rare genetic disorder which affects his brain. On a scale of 1-10 the consultant told us that Judes condition was a 9 and as the disease is progressive it will mean it is unlikely he will live past childhood. We were told that worst-case scenario he might not live to his 1st or 2nd birthday.

Judes condition is so limiting that he cannot move or co-ordinate his body in any way, is unlikely to ever walk or talk and has been certified as blind. Following several genetic tests we were told Jude has a disorder of the DARS2 Gene, inherited from both parents, and a condition called LBSL (Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation) a form Mitochondrial disease for which there is no treatment or cure.

We are heartbroken and living every parent's worst nightmare knowing that we may one day have to say goodbye to our precious little boy. It is nobody's fault that he has this condition, it is just a cruel stroke of nature that affects many other children and families across the UK. We are starting to come to terms with our life that has changed in so many ways. Jude has older twin brothers and a sister who are starting to realise that Jude is different and he cant interact with them in the normal.

Nevertheless Jude is loved immensely by all our family and we always try to keep him central to activities and involved in everything we do. However long his short life may be, one thing is for sure it will be full of love. As a family we are well supported by some good friends, the NHS and some fantastic charities that rely on public support and donations to do what they do. The Lily foundation have helped our family in so many ways during the short time we have known about Judes condition and Team Jude are doing what they can to help raise funds, so the Lily foundation can carry on their fantastic work supporting families, raising awareness and conducting vital research to help find treatment and one day hopefully a cure for Mito.

Having taken on The Reading Half Marathon in March 2019 and the Mizuno Endure 24 hour running challenge in June 2019 Team Jude are continuing their fundraising efforts and will be taking on many different challenges through 2019 and beyond.

You can join us - you can either donate or take on your own challenge. Together we will make a difference.