Mercy Cuthbertson was the most amazing and beautiful 5-year-old girl from North Tyneside, living life to the full in her reception year at school when she started to feel dizzy and get headaches. This escalated over a few weeks into double vision and her falling asleep in class, at times for hours. Her behaviour also changed, and she went from loving school, sports and socialising to being anxious and reserved which simply was not her.
Her parents took her to see her GP, who took their concerns seriously from the outset. Within days of her presenting at the GP Surgery, she attended the RVI (Royal Victoria Infirmary) in Newcastle which is where life as her family knew it simply imploded.
Following a MRI scan the most devastating diagnosis was forthcoming with the words that nightmares of made of delivered to her parents, it’s a brain tumour, it’s inoperable, there is no cure and the final nail in the coffin being a prognosis of 8-11 months.
The emotions her parents felt cannot be articulated, however this all had to be put aside as Mercy was the priority and quickly underwent 28 radiotherapy sessions, brain surgery and intense physiotherapy.
She never complained, never sought sympathy and fought like the trooper she was.
Dispute being given an utterly bleak prognosis, her parents explored options abroad and started a fundraising campaign. They had contact with clinics in Germany, USA and Zurich with Mercy ultimately securing a place on a Clinical trial in Zurich and starting a course of ONC201 which was shipped from the United States.
Devastatingly, despite all this and a worldwide search for medical treatment which would help prolong Mercy’s life, it wasn’t to be, and she died in her parents’ arms after a 9-month DIPG battle, at home, with her beloved bichon puppies Coco Junior and Teddy comforting her. They were all she wanted in her final few days, and they didn’t leave her side.
Her parents have vowed to raise awareness of DIPG tumours and support paediatric brain tumour families going forward by setting up a foundation in Mercy’s name. Nothing can take away the pain of losing the most adored and loved child in such catastrophic circumstances however giving back will keep Mercy’s memory alive.
DIPG Brain tumours destroy lives, they are fatal, underfunded and project themselves in children’s lives unannounced causing utter devastation. The DIPG community need to stand together and raise awareness so that future families have more hope than Mercy and her parents did.
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