Lowri & Dean’s Long Course Weekend Half Marathon

These Guys, My Hero’s. Dean will be pushing Lowri around the course for this Half Marathon to raise awareness on Lowri’s condition. Dean is part the Warriors Triathlon club so please look out for the guys in pink and black this weekend and give them a shout and a cheer.

Lowri is a very happy beautiful fun loving young lady with a true zest for life. As a family we have always said that the world needs more Lowri’s. Lowri failed to meet all her milestones as a baby. She had so many blood tests, genetics, MRI’s, scans, lumbar punctures, X-rays and at 1 point we were having 8 different monthly appointments with various Consultants & Therapists, but we could never get an a diagnosis as to what was causing all her issues. We went for 19 years not knowing what had caused Lowri’s conditions. As she transitioned across to Adult Services, she was under the Complex Disability Team and her new Psychiatrist Dr Thurston asked if we would like to consider genetic testing as there had been such progression in medical science since Lowri had all these tests done as a Baby. In April 2023 we finally got a diagnosis and we found that to date (May 2025) there are currently another 456 Lowri’s in the World. Lowri was diagnosed with Gatad2B associated neurodevelopmental disorder or GAND Syndrome for short. At present there is NO cure or treatment opportunities for GAND. We have been lucky enough to meet up with other GAND families in the UK recently and got to listen to Dr Tyler Pierson who flew all the way from L.A. to give a talk on all his research into this disorder. This would not have been possible without the help of an amazing lady named Rebecca who herself has a beautiful little girl Shea with the same condition. Rebecca set up the only UK based Charity GAND AID. Their mission is to raise awareness, support individuals and families, collaborate on medical research projects to then hopefully find the best possible treatments available for the patients. We raising money in aid of GAND AID UK and every donation will help. Thank you in advance for your contribution to this cause that means so much to us.