Mum with rare condition on family life and 'being brave enough to show weakness' as fundraising fight continues

The Grainger family

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

A Royston teacher and her husband have spoken about how their family life is impacted by the ultra rare genetic condition she was diagnosed with after years of excruciating pain.

Verity Grainger was diagnosed with mitochondrial neurogastrointestinal encephalomyopathy in 2016 - a condition so rare that only 200 people have been diagnosed worldwide. 

MNGIE blocks the production of a particular enzyme, causing a build-up of metabolites in the blood that damages mitochondria. It means the 32-year-old's body is weakened, inflamed and she suffers extreme pain. 

The shock diagnosis came after years of symptoms, which the family put down to a time when she got very sick while travelling in Sierra Leone.

Verity said: "I got so used to it, because you have to eat. I would be in tears from pain. At times it's worse than contractions in childbirth"

Verity Grainger and her son Noah 

Verity Grainger and her son Noah - Credit: Grainger family

Joshua, who is a data analyst for Amazon, and Verity met in 2014, married in 2017 and now live in Wrestlingworth. They have a two-year-old son, Noah, and a dog, Gilly. 

He said: "Getting the diagnosis was such an emotional time. We chose not to look at specifics and worry ahead of time because there is very limited information out there. We weren't given many options at all, but there is this compassionate treatment."

The family are fundraising for £500,000 for Verity and her older sister Zillah - who also has the condition - to have enzyme replacement therapy, a promising treatment to make them stronger and able to have more time with loved ones. 

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Verity said: "Having kids was what I always wanted. We wouldn't have had Noah if he was likely to also have the condition. Josh had a blood test and he's not a carrier - for Noah to have it both of his parents would have to be carriers. It's so rare doctors actually asked me if my parents were related.

"MNGIE affects the physical aspects of parenting. If Noah needs to be carried or put in his room when he's having a tantrum that is for Josh to do.

"When we're out and about Noah has asked me to carry him - and I have explained 'carrying is with daddy and you walk with mummy'. Sometimes we would be rooted to the spot.

"Mentally I am very strong - I am very good at thinking you have to deal with what you've been given. In so many ways I have been given amazing things - I have been able to become a mum and I have my husband and a job I love and family who love me. Just focusing on the things that hold you back is not a good way of living life."

Verity and Zillah's older sister Gail died from complications of MNGIE in 2021 - so the race is on to raise enough cash for treatment. They currently have around £65,000 - with more than £35,000 raised on their fundraising page. 

Verity, who is also fighting non-bacterial pneumonia at the moment, said: "Losing my sister made the mental aspect even trickier - because we know how it goes. 

The Grainger family

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

Josh said: "Verity is a rock to me. I do have wobbles where I think 'why us?' - it's difficult for me to see someone I care about and love so much deteriorating like this.

"Talking about it publicly is a hard thing to do, we prefer to be private and now we are forced not to be because Verity needs this treatment.

"There's no greater motivation for me and I am finding inner strength that I didn't know I had to do this for my family.

Verity, who teaches at Tannery Drift First School, said of the response so far: "The messages on the fundraising page have been overwhelming.

"There's comments from people you never knew you made an impact on, parents of children that I have taught in the past. I love my job and feel privileged to be able to help shape children's lives. 

"Letting people know this about me was incredibly scary -, we had always kept it to ourselves, it wasn't known to even some of our close friends, and the parents of children I teach. 

"For me that was one of the hardest things, being brave enough to let people know your weaknesses. Our families and friends and those who have donated so far have been amazing - and we have got to get the compassion of strangers now."

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