Billy is a popular, kind hearted, determined teenager who has just completed TY and turned 17 at the end of June. He is a talented soccer player and began attracting interest from some UK academies from an early age.
He has represented his county in soccer from U11 to U14 and then went on to play for LOI team Bray Wanderers at U15. It was around this time that his symptoms began having an effect on his physical development and where his story begins.
Billy was referred to Crumlin in early 2023 having been back & forth to our GP with concerns of symptoms that Billy was displaying. Billy was found to have growth hormone deficiency, and AVP deficiency (diabetes insipidus).
An MRI showed a thickened pituitary stalk was causing these hormone deficiencies. He began AVP deficiency medication immediately and he had further testing and many more MRIs over the coming year before he began growth hormone injections. MRI’s continued every 3 months and his results remained stable.
However, in early 2025 he noticed blurry vision and the results of more blood tests and a lumbar puncture showed a rise in his HcG levels. On 31 March he was diagnosed with Bi-Focal Germinoma, a type of brain tumour, and the following Monday he was admitted to Crumlin for his first of 4 rounds of chemo. We will now travel to Manchester for 3 weeks for Billy’s proton beam therapy. It has been a long and difficult few years for Billy but his prognosis is extremely positive and all going well, he will be back on the soccer pitch in the coming months.
As soon as we were told that Billy would need proton beam therapy we were also told about the Gavin Glynn Foundation and the unbelievable work that they do and would be offering to our family.
We have been touched and overcome by the level of support that has been afforded to us and we will be eternally grateful.