Help Wrestlingworth mum fund treatment for rare condition so she can see her little boy grow up

A brave mum battling a rare condition hopes a £500,000 treatment can buy her more time with her husband and son.

Verity Grainger, 32, was diagnosed with mitochondrial neurogastrointestinal encephalomyopathy (MNGIE) in 2016, a life-shortening genetic condition that caused the death of her beloved sister, Gail, in 2021.

After a pneumonia scare last month, Verity, who lives in Wrestlingworth, and loving husband Josh are now determined to reach their crowdfunding target so Verity can receive a revolutionary new treatment that's not on the NHS.

Verity told the Chronicle: "It would give me hope and bide me time to see my baby boy grow up. My sister died and she was in her early 40s. [If that happened to me], Noah would be 12.

"If it could stop the decline and keep me where I am, that would give me a future."

MNGIE blocks the production of a particular enzyme, causing a build-up of metabolites in the blood that damages mitochondria.

Verity's body can't clear that build up naturally, and the condition particularly causes problems for the digestive system.

She explained: "I started having problems when I was about 18, but I wasn't actually diagnosed until 2016.

"It causes stomach cramps, bloating, diarrhea, muscle wastage, rapid weight loss, and vomiting - that can happen very fast, sometimes five minutes after eating.

"We have got a two-year-old and I can't pick him up and carry him if we're out and about. I have to bear in mind how much I use my muscles.

"It's about being aware with activities how much I can do. It does impact us every day."

It was originally thought that brave Verity had Crohn's disease, until she had an allergic reaction to her treatment.

After receiving further tests, it was confirmed that Verity had MNGIE, but having such a rare disease - only 200 people have been diagnosed worldwide - came as a shock.

"I was just really stunned," said Verity. "My first thought was what can I do to fight it?"

However, it was also discovered that Verity's two sisters, Zillah Scorer and Gail Pearson had MNGIE, too.

Both their parents were carriers of the disease but had not known.

Remembering the loss of Gail, Verity said: "She was like my idol growing up. She was really bubbly, really kind, an eccentric character.

"My middle sister [Zillah] was recently diagnosed, but my big sister was in denial and not really seeking help.

"I kind of pushed it to the back of my mind until Gail got taken."

Gail died from organ failure in 2021, with a post mortem revealing that she had also had pneumonia.

However, a health scare for Verity in January made the couple take action.

"She was diagnosed with a rare type of pneumonia - eosinophilic pneumonia - and was on steroids to clear her lungs," said Josh.

"I think that's what kickstarted it," added Verity. "We were planning on crowdfunding, but I came out of hospital and said, we need to do this now!"

Verity is fundraising for herself and Zillah to receive a pioneering new treatment that was trialled in the UK just two years ago.

The process is called 'novel enzyme replacement therapy', and works by encapsulating the missing enzyme in red blood cells, allowing the enzyme to survive long enough without the body’s immune response breaking it down.

The sisters would need to go every four to six weeks for treatment, allowing them a fuller life, and to be strong enough for other pioneering treatments in the future.

Verity, who teaches Year 3 students at Tannery Drift Primary School, Royston, said: "We have had lots of local support and it's been quite overwhelming. It's been amazing and we have had some really generous donations, lovely messages, and friends organising events for us. One of my pupil's parents is doing an ultramarathon!

"We've reached 12 per cent of our target, over £60,000, and we just need to continue the momentum.

"I hope we can rely on the emotion and compassion of others to help us out."

Brother-in-law Aaron Grainger added: "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 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."

Josh concluded: "There's rumblings of stem cell treatment in the future and Verity needs to be strong enough if something like that becomes available.

"I can't replace Noah's mum. They are incredibly close and this would buy us time."

To donate, visit: the JustGiving page here.