Verity was diagnosed with MNGIE in 2016. MNGIE (mitochondrial neurogastrointestinal encephalomyopathy) is an ultra-rare life-shortening genetic condition that blocks the production of a particular enzyme, causing a build-up of metabolites in the blood that damages mitochondria. So rare in fact, that there are only around 200 people documented to have the condition worldwide. Sadly, Verity is one of these cases. MNGIE is an unmerciful condition that impacts many areas of the body and causes it to slowly degenerate.

Unfortunately, there is no proven treatment for this condition. The only unsubstantiated option her and her husband Joshy have been given is to attempt a bone marrow transplantation, which comes with considerable risk. A previous trial of this in patients with MNGIE was overwhelmingly unsuccessful. There is, however, a safer treatment known as enzyme replacement therapy, which has previously been used in clinical trials to treat this condition with promising results. Enzyme replacement therapy works by encapsulating the missing enzyme in red blood cells. This allows the enzyme to survive long enough for the treatment to be effective without the body’s immune response breaking it down. This would mean regular infusions of the enzyme would be needed, around every 4-6 weeks which would allow the body to perform the function it cannot do on its own, i.e., being able to remove the mitochondria-damaging metabolites from the bloodstream.

This has been approved for compassionate use, but comes at a considerable expense, estimated to cost around £500,000! (Not including the 2.9% + £0.25p per donation JustGiving fees). This would cover the cost of a neurologist to conduct the trial, the continued manufacturing of the enzyme, and any patient costs. This will not only provide the treatment for Verity, but also her sister, Zillah who also has the same condition. This would be run at St George's University Hospital in London.

This is a big goal for them to reach on their own, so they are asking for support to provide this essential medical treatment for V. They are crowdfunding to raise the vital funds needed - and they need all help they can get. https://www.justgiving.com/crowdfunding/compassionate-treatment-for-mngie?utm_term=WpMrgX5Wd

That's why we're helping out by doing this challenge. We are hoping to raise at least £2,000 to support towards Joshy and V and their families reaching this goal. We ask if you can spare any donation to our cause.

Here is a message from her wonderful husband Joshy: "Those who know Verity will understand when I say that she is truly an incredible and inspirational lady. Despite her condition, she continues to teach at Tannery Drift First School in Royston, Hertfordshire, where she is an adored teacher, usually of Year 1 pupils, but more recently Year 3. Throughout the pandemic she has put her life at risk to ensure her children are looked after and supported. She is a beloved friend to so many and will always go above and beyond to help those close to her. She is also the most fantastic mother to our wonderful son, Noah, and is literally the light of my life!

We have witnessed first-hand how destructive this condition is, having lost V's sister Gail in January 2021, and I could not live with myself without knowing that we had tried everything possible in an attempt to fight this disease and give Verity and our family the best chance possible! Time is not on our side, and each day that passes without treatment serves to weaken Verity further."

If you have taken the time to read to this point, thank you so much! Please consider helping us! Please give Verity the chance to see her son grow up! Please buy us some time for a permanent cure to become available!

You can read their full story on their crowdfunding page here: https://www.justgiving.com/crowdfunding/compassionate-treatment-for-mngie?utm_term=WpMrgX5Wd

Thank you!

Naya, Dave, Kiera, Sam, Siri and Ian