Althea was born on 23rd September 2016, a beautiful 6lb 8oz baby girl. Thea was an incredibly happy, laid back and super smiley little girl. She loved toys and music, was a big fan of a splash at bath time and was fascinated by lights (with the Christmas tree being a particular favourite.) We began to have some worries in Thea’s development around 5 months when she wasn’t reaching her milestones, she was unable to hold her head up more than a few seconds and her eyesight was a concern. We initially visited our GP with these worries and over the next few months we had numerous trips to doctors/paediatricians and neurologists covering various tests, but no diagnosis was reached. Some tests had long waiting times for results so in the meantime we tried to get on with normal day to day life, lots of trips to the swimming pool and the park and a big tea party (with lots of cake) for her first birthday. Thea put on a brave face and continued to light up our world with her infectious smile and happy self, even though in this time we started to see some regression in muscle tone and skills. At the beginning of November whilst at home, Thea had an episode where she briefly stopped breathing. We were unaware what had happened but went straight to the hospital. The doctors couldn’t confirm what the episodes were, although we now know that they were seizures and Thea had more over the next few days.

On the 11th of November 2017, we received the devastating news that previous tests that had been carried out had come back and revealed Thea had GM1 gangliosidosis, type 1. We were utterly heartbroken to hear our beautiful daughter was unlikely to see her second birthday. Thea fought hard and continued to be so brave and resilient, still engaging and giving us the smiles that we were so very grateful for. Sadly, whilst still in the hospital, whilst the doctors were working on medicating the seizures to enable us to try and get home, Thea picked up bronchiolitis. She fought hard over several days but the virus was proving too much for her. We were moved to Keech, a local children’s hospice where we were able to spend quality family time and were even able to take Thea for a swim, one of her favourite things to do. On the 26th of November 2017, our whole world fell apart when Thea passed away. She was surrounded by love then and always. Our lives will never be the same without our amazing Thea, taken from us so cruelly by GM1. We will always do whatever we can to support this foundation in the hope that one day a cure can be found.