Brave Daventry teenager Henry battles rare neurological condition that causes him to go blind

Daventry mother Noo Jarvill will never forget the fateful day her little boy uttered the words 'mum, I can't see'.

Tuesday, 23rd November 2021, 2:32 pm
Henry with Fergus, his new therapy puppy.

Henry Jarvill was 11 when his world was plunged into darkness.

"He went blind - totally out of the blue," Noo told the Daventry Express.

"Without warning, everything went pitch black for Henry."

Henry made his own Stormtrooper costume for MCM Comic Con.

He was rushed to hospital and thankfully later that day, his sight returned.

His mum added: "This happened three more times with no warning. The third time it happened, Henry was left with blurred vision for a few months. Once that stopped, one morning, he couldn't feel or move his legs - he was completely paralysed from the hip down - it was so frightening, for him and us."

Again, Henry was hospitalised and doctors confirmed he was paralysed. He had numerous brain scans, but doctors were unable to diagnose a cause.

Noo added: "He remained in this situation for a couple of months and he attended school on crutches, dragging his legs around. Finally, one day, his legs just started working again, but during that trial, he also started involuntarily vomiting a few times a day - it was awful. I'd be talking to him, and he'd suddenly be sick. So he was hospitalised again while they investigated, but found no physical reason."

Henry with his parents Noo and Richard and sisters Lizzi and Lexi.

His mum, married to Richard, who is in the Army, said he was sick every day for three months.

She added: "The poor child was beside himself with worry about what was going on with his body. Then he started having seizures - sometimes really physical and sometimes eye rolling and twitchy, but both types last for hours. To see your child like that was extremely frightening so we have had to call the ambulance quite a few times."

Henry, 15, who is autistic, has continued to have these seizures almost daily for two years now. He is enrolled in school - Potterspury Lodge - be he is rarely able to go as when he wakes up after having a seizure, his legs 'don't work'

Noo, who also has two daughters - Lizzie, 22, and Lexi, 19, added: "He can feel them and has sensation, but he can't walk. He spends most of his time either seizing or unable to walk and as a result feels very low a lot of the time, as it’s rare he can get out of the house "

Henry was finally diagnosed with a condition called Functional Neurological Disorder; where the nervous system doesn't function properly and the brain and body don't communicate as they should.

"It often affects autistic people," added Noo, who works at the Hope Centre for homeless people in Northampton.

"Henry is so ill, but he has accepted his condition and goes from day to day hoping the next will be better – but it rarely is. He needs someone with him 24/7, and that’s just our new way of life - he copes really and we are so proud of him for pushing through when there are many days he has wanted to give up ."

He recently attended MCM Comic Con, a comic convention at the NEC in Birmingham where people dress up as their favourite characters.

Henry, who loves to make things, hoped for a miracle that day.

"We were absolutely desperate that he wouldn't seize on that day," Noo said.

"Because Henry is generally only well in the evenings, we try to keep him busy as he's missed school for several years now. So we buy him big black square floor foam matting from Halfords and he draws out patterns on them."

Hours of hard work paid off for creative Henry, who made a Stormtrooper costume for the special day.

"He made it to the event and was well enough to walk that day," Noo added.

"It was 100 times more meaningful for Henry than most people there and I'm so happy he was well enough as his grandfather got the tickets for his birthday."

Henry told us: "I wan't people to know about all of this, I think it's important for people to know things aren't always easy."

Here at the Daventry Express, we like to help our community when we can. We want to make Christmas brighter for Henry.

We're appealing for the following items and will give publicity to any generous firms who can help.

Here's our Christmas list for Henry, but shhhhhhh, don't tell him!

Band saw

Disc sander

EVA foam flooring tiles

Craft foam

Superglue

Spray paint

A large cutting mat with a grid to measure things on

3D printer

If you can help with any of the items, please email [email protected]