After a long year under investigation 2 year old Elsie was diagnosed with the rare genetic disorder Trichothiodystrophy in January 2017. Trichothiodystrophy affects many parts of the body. It causes delayed development, intellectual disability and recurrent infections. Elsie is short sighted and is extremely sensitive to ultraviolet rays from sunlight. On the plus side Elsie is very sociable, out going and has an engaging personality. There is no cure and very limited information. We hope to bring this condition to the attention of others and maybe one day treatment will become available.

Friends at Howden Group are trying to raise more awareness for this issue and to do that, we are trying going to hold a Walktober where we will form teams that will try to collectively walk (at least) a million steps in Walktober in order to raise more funds to help find a treatment for Elsie.