28/09/2023
After an extremely difficult year of genetic consultations and metabolic testing, Theodore, my darling Grandson, has been diagnosed with GM1 Gangliosidosis. This is an inherited lysosomal storage disease and is an extremely rare and regressive condition that currently has no cure. Olivia (my gorgeous daughter), Greg and their family tragically lost Theo’s cousin Oliver earlier this year to the same disease.
Our gorgeous Theodore brings a smile to our face every day being the happy little boy he is. He’s currently living life at his own pace, laughing and enjoying life’s pleasures. It’s going to be an extremely challenging time to come for all involved in his life, we just ask that everyone keeps Olivia, Greg and Theo in their thoughts and prayers, making memories with us all.
So, with making memories at the forefront of our minds, we want to create some positivity from this, and what’s better than fundraising?!
Our Family will be participating in the Dorney Lake Run, a mixture of walking/ running 5K, 10k and a half marathon, on Saturday 11th November to raise money for CureGM1 Foundation.
We will be running for Theo, his cousin Oliver, and other Children and Families suffering from this condition. Any donation would be so appreciated (link in bio), and of course, please join us to run/ walk on the 11th November to spread awareness of this disease.
https://www.justgiving.com/page/ilona-shields-1695059265726?utm_medium=fundraising&utm_content=page%2Filona-shields-1695059265726&utm_source=copyLink&utm_campaign=pfp-share