Family's £500,000 fundraiser for inspirational teacher with rare condition

The Grainger family

The Grainger family is fundraising for treatment for mum Verity, who has a rare genetic condition. - Credit: Grainger family

A fundraising appeal has been launched for a teacher with an extremely rare degenerative condition, so she can have more time with her husband and young son.

Verity Grainger was diagnosed with mitochondrial neurogastrointestinal encephalomyopathy in 2016.

MNGIE is a life-shortening genetic condition that blocks the production of a particular enzyme, causing a build-up of metabolites in the blood that damages mitochondria. Only 200 people have been diagnosed worldwide.

The diagnosis was devastating for the 32-year-old, who grew up in Royston and is a Year 3 teacher at Tannery Drift First School. She now lives in Wrestlingworth with husband Joshua and their two-year-old son, Noah.

Verity Grainger and her son Noah 

Verity Grainger and her son Noah - Credit: Grainger family

Her brother-in-law Aaron said: "Verity is an incredible and brave human being, who despite being clinically vulnerable, carried on teaching at Tannery Drift Primary School in Royston during the worst of the pandemic.

"She is well-loved by her students and teachers alike.  She is also an amazing mum to Noah, who absolutely adores her.

"She is inspirational and has dealt with this condition with strength and grace from the day she was diagnosed. They are a wonderful, kind and caring family who do not deserve this."

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There is a treatment which involves novel enzyme replacement therapy - trialled just two years ago. With this treatment, those with MNGIE can gain strength and stand a much better chance. 

The treatment isn't just for Verity, however. Following her diagnosis, her elder sister Gail and Zillah, her younger sister, were also told they had the condition - and, devastatingly, Gail passed away from complications last year, aged just 42.

Treatment for both Verity and Zillah costs £500,000 in total - and the fundraising page has now surpassed £28,000 in under a week.

The Grainger family

The Grainger family is fundraising for treatment for mum Verity, who has a rare genetic condition. - Credit: Grainger family

Aaron said: "We have only started fundraising in the last few days -  people who do not know the family personally have donated generously and sent kind messages of support.

"These include those in football communities - as Verity and her family are lifelong Cambridge United fans and Joshua is a keen Spurs fan. The kindness shown so far has been overwhelming."

To donate go to the fundraising page by searching 'Joshua Grainger Compassionate Treatment for MNGIE' at justgiving.com