The Myton Hospices - News - Debbie conquered our Skydive in memory of her daughter, Hannah

At nine years old, Debbie’s daughter, Hannah, was diagnosed with Juvenile Batten’s Disease, a degenerative condition that causes blindness and seizures, and reduces the ability to eat, talk and walk.

Hannah’s symptoms first started with eye sight problems when she was seven years old and was treated at Great Ormond Street Hospital where she was initially diagnosed with Cone-rod Dystrophy.

Debbie commented on this worrying time, saying:

We were getting our heads around the fact Hannah will go completely blind. We were thinking about how her life would be affected with losing her eyesight. Little did we know what else would come.

Hannah’s Cone-rod Dystrophy can sometimes be a symptom of other conditions and after a few tests, the family received the Juvenile Batten’s diagnosis.

Debbie added:

We were told the life expectancy was late teens/early twenties and Hannah had sadly started to deteriorate. She lost her independence and was completely reliant on us.

I gave up work at the end of 2016, when Hannah was 19, to spend some more time with her. However, we were robbed of that time as she was deteriorating quickly. She was in constant pain and we didn’t know why.

Hannah was admitted to Warwick Myton Hospice for pain control and symptom management but the pain was still too much for Hannah. During her stay, Hannah experienced a perforated bowel causing sepsis, and due to her condition, surgery was not an option.

Debbie said:

We decided to keep Hannah at Myton as we knew she would be as comfortable as possible and everyone would look after her so well.

Hannah died on 24th February 2017, just 19 years old.

Debbie continued:

Everyone at Myton was so good to us and so good with Hannah. Nothing was a problem. She had a lot of visitors and Myton made so many accommodations so everyone could say their goodbyes which meant so much.

We also had access to one of the family accommodation suites which was a blessing. It made being at Myton so much easier. I could head back for a shower, cup of tea or just five minutes of alone time during all the chaos and unknown.

The nurses and doctors explained everything to us, they were absolutely fantastic. You make bonds with these strangers in such a touching way. Two nurses even came to her funeral.

Debbie wanted to express her gratitude to Myton. She commented:

I went back to work in the May of 2017 and wanted to do something different. I started working at one of the Rugby Myton shops a couple days a week to start giving back. It was a good ease back into work after losing Hannah. I soon needed more, though, but the part time job allowed me to still volunteer. I then got a full-time job so had to stop at the Myton shop.

After this, I had been saying that I needed to do some fundraising for a while, but never got around to it. I saw the Skydive email come through and immediately signed up. I don’t really know why as it’s never been something I’ve been desperate to do, but I knew this is what I needed to do in memory of Hannah. My partner, Nick, said I would never do it. But it was too late, I had already signed up!

Debbie took part in our September skydive which was pushed back to October due to the typical British weather.

Debbie loved the experience, saying:

It was brilliant. I can’t describe the feeling. We were 12,000 ft in the air and was falling at 120 mph, but I wasn’t scared. It doesn’t feel like falling. It’s something I can’t describe but would experience over and over again.

Debbie raised an incredible £1,525 in memory of Hannah!