Royston teacher with rare condition fights to fund treatment

Verity Grainger, 33, and her sister Zillah, 39, both suffer from the genetic condition MNGIE (mitochondrial neurogastrointestinal encephalomyopathy).

The condition is so rare that there are only 200 documented cases worldwide. Sadly, Verity's eldest sister Gail died in 2021 from complications of the condition, aged just 42.

Now Verity, who teaches at Tannery Drift First School in Royston, is beginning to experience more sinister neuropathic symptoms of the condition - which causes weakness, inflammation and extreme pain.

There is no proven treatment for MNGIE, but enzyme replacement therapy - which costs around £500,000 - has been used in clinical trials with promising results.

Verity and her husband Josh, who live in Wrestlingworth with their three-year-old son Noah, are looking to raise money for both Verity and Zillah to undergo the therapy at St George's University Hospital in London.

They are hoping to raise awareness in light of Rare Diseases Day on February 28.

Verity with her son Noah (Image: Luna Louise Photography)

Josh said: "It's incredibly difficult to witness this happening in front of your eyes to the person you love more than anyone, but we are a strong family surrounded by love who will continue to fight on together."

The family said they are "overwhelmed" by the support they have received so far - with more than £175,000 also raised, factoring in both online and offline donations.

Josh's brother is due to run his first-ever marathon in April to support Verity's cause, and the father of one of Verity's former pupils is due to run his second ultra marathon in support.

"Despite her diagnosis, Verity continues to remain positive and is the most fantastic mother to Noah," Josh said.

"Throughout the pandemic she continued to teach in the classroom, putting her life at risk to look after her class.

"We have had so many donations and messages of support from her current and former pupils. This is all testament to what a truly wonderful person Verity is."

Sisters Zillah, Verity and Gail (Image: The Grainger family)

Two anonymous donations of £30,000 each came from one of Verity's former pupils and another person they knew.

Verity's job at Tannery Drift - where she has taught for nearly 10 years - has been a welcome distraction, although her symptoms have begun to affect her more during the day.

Josh said: "It's been good for her mental health as she loves her job and is really good at it.

"Nerve damage in her feet causes quite a lot of pain at school, and since she's been back this year she's been hobbling more."

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While Noah has been shielded from his mum's condition - and is not at risk of developing it as Josh is not a carrier - he has started to copy Verity by complaining that his feet hurt.

Verity was first diagnosed in 2016 - and the family does not know how rapidly her condition will progress.

Josh said: "We are obviously in fear of things going south rapidly, particularly with the condition taking further hold.

"I know I couldn’t live with myself without knowing I’d tried everything to help my wife and our family.

"Without this incredible support we wouldn't be where we are now, so we want to thank each and every one of you who have donated, shared our story or run your own fundraisers."

To donate go to justgiving.com/crowdfunding/compassionate-treatment-for-mngie.