Master of Music at Norwich Cathedral, Ashley Grote, will be running the London Marathon this Sunday (April 23) for the eighth time in aid of Great Ormond Street Hospital (GOSH) which has been treating his young daughter Emily who has a rare brain tumour.
Team Emily Grote have raised £138k over the past seven years and are set to top the £150k mark this year with an extra £16k and counting.
Ashley said: “Our journey with GOSH began back in June 2014, when Emily (aged 3) was diagnosed with a rare brain tumour, a craniopharygioma. Since then she has undergone multiple neuro surgeries at GOSH as well as a course of proton beam therapy in Jacksonville, Florida.
“Emily’s tumour has had a colossal and devastating impact on her life. Perhaps most significantly, it has left her completely blind. She is unable to produce most of her own hormones so is on a round-the-clock regime of life sustaining medication. Damage to her brain has led to hypothalamic obesity and type 2 diabetes.
“Most recently, Emily had a long stay on Koala ward at GOSH from October to December 2022, for an operation to attempt to resect much of the tumour. This led to various complications and – sadly – we learnt in January 2023 that the cystic component of the tumour has refilled again. As always, Emily’s future is uncertain and living with that uncertainty takes its toll on our family, who have dealt with all this for nearly nine years now.
“The most important message, however, and the point of running another London Marathon, is that through it all GOSH have always been there for Emily and for us. It is impossible as a parent to express one’s gratitude for the world’s best paediatric medical treatment, there whenever Emily has needed it, and the many gifted professionals who deliver it.
“Mr Kristian Aquilina is Emily’s neurosurgeon and has performed numerous complex procedures to help her. The whole team of staff are devoted to the children and families in their care makes a long stay in hospital bearable even in the toughest of times. Nurses who are constantly going the extra mile, teachers from the GOSH school who bring joy and purpose to Emily’s hospital room, play workers and specialists who bring fun and laughter, domestic workers who serve meals with a smile and cheerful conversation. GOSH is an extended family for those who depend on it,” said Ashley.
“Running another London Marathon is just one way of expressing our ongoing gratitude and raising some money, in the hope that when another family needs the same help, GOSH can be there for them too. Thanks you for your continued support and great generosity in donating again to this special cause.
To sponsor Ashley and Team Grote click here.
Pictured above are Ashley and Emily Grote outside GOSH.
Read the full article here
