Help our daughter Jenni with her AVM battle

Hi 5 years ago we discovered that our beautiful brave daughter Jenni had a very rare life threatening condition. She was diagnosed with an AVM ( an arteriovenous malformation) this is an abnormal tangle of blood vessels which can rupture at anytime. These conditions are extremely rare but Jenni’s even more so because not only does it affect her face/ scalp area but it is also partially in her brain.

Jenni has this condition because she has a faulty PTEN gene. This gene mutation

is particularly nasty and can cause various serious health issues. Sufferers are at very high risk of several different cancers because of the way it affects the body.

We live in Staffordshire and travel regularly to Great Ormond Street hospital for treatment but despite their best efforts there they have been unable to stop her AVM from growing, as her AVM is the most aggressive that they have ever tried to treat. Unfortunately as Jenni has grown (she is now 14) so has her AVM and now it is very large in size which means it is putting extreme pressure on her heart resulting in high output heart failure . She also suffers seizures, hearing loss, autism, severe anxiety and a facial palsy all because of her condition and has to deal with people staring and pointing at her condition everyday.

We are now running out of treatment options and Jenni’s future now looks very uncertain. We are therefore raising money to help with the costs associated with her condition and travelling to hospital ( in the last year she has had over 60 appointments to attend) but also to make as many memories with her that we can

Thank you for taking the time to read our story.