Donna, 23 from North Tyneside, has been coming to St Oswald’s Hospice for over 10 years. Donna has pyruvate dehydrogenase deficiency, which is a rare mitochondrial disease and currently affects roughly 15 people in the UK. The average life expectancy for people with this progressive brain disease is 7-10 years old; currently Donna is defying expectations and is one of the oldest people in the world living with this disease.
As Donna fully lost the ability to walk at the age of 15, suffers from epilepsy, has piped oxygen when poorly and sleeps on a life support machine, the Great North Run seems only a dream to be able to complete.
Alison Chan, a close family friend and Donna’s carer on a Sunday, has done the Great North Run before, and this year has offered to take Donna on the 13 mile challenge with her daughter Jenny, who is participating for the first time.
Donna’s mam and full time carer, Fiona, tells us more:
I couldn’t survive without St Oswald’s, the care, love and support we receive from the Hospice is indescribable. The variety of services they offer is incredible and they help us in so many different ways. Donna comes to the Hospice 3 nights a month for respite care which gives me a few days to get the house sorted, get some sleep and to not worry as much through the night. I also come in weekly for the parents group and fortnightly for cognitive therapy, it really benefits me as I often get worried and upset leaving Donna.
The parents group is a safe place in a relaxed environment; it’s good for a chat, cry, cuppas and anything else that we feel we want to talk about that day. It’s good for our wellbeing too, we have reiki sessions and learn other stress relieving techniques. With Donna’s complex needs she can end up in hospital for months at a time, her last visit was 3 months and I couldn’t bear to leave her at college afterwards. Luckily, the hospital and the hospice staff meet up after each of Donna’s hospital visits to discuss and review the best course of action.
I think the biggest support we receive from the Hospice is helping us to be prepared. Working with all the departments in the Hospice we have come up with Donna’s end of life plan. We work closely with Davina in the Spiritual Care Team, the nurses and Owen, the Lead Consultant for Donna at the Hospice.
Donna is a happy, full of fun and an absolute character to be around. She loves being the centre of attention and loves joining in and being around people. St Oswald’s let us make the most of the time we have together and it really isn’t just the 3 nights respite we benefit from, its Donna’s whole life and I honestly don’t know what I’d do without the Hospice.
Once Donna turned 18, we realised it was difficult to receive the help we once had. Luckily St Oswald’s provide respite care for 18-25 year olds, but most other funding stops once they reach adulthood. Donna has needed a new wheelchair for over 2 years now, it’s been difficult as she has grown into an adult, and she doesn’t fit properly in the one she currently uses and if affecting her chest and her breathing. Amanda McCleery, a Physiotherapist at the Hospice has been incredible in helping us to get a new wheelchair. She has been coming to clinics with us, giving us advice on equipment we need at home and explaining the best type of wheelchair for Donna.
Everyone in the Hospice knows Donna, she’s loud and causes mayhem everywhere she goes, and I imagine she will be the same on the Great North run day. She has a special wheelchair for the day including her own pink horn and number plate. She’ll be sporting her new St Oswald’s vest along with a big pink tutu to draw lots of attention to herself. I honestly never thought she’d be able to take part in the Great North Run, so I’m over the moon that Alison has asked to take Donna round the route. It’s an iconic race here in the North East, so I’m glad she’s having the same opportunity as other people her age.
If Donna's story has inspired you to challenge yourself, do something different or make you want to support the work the Hospice does, please visit our Get Involved section to find out how you can help.
You can also make a donation toDonna here: www.justgiving.com/fundraising/fiona-boyd10 or directly to the Hospice to help us to continue providing the care and support to all local North East families here.