our stories

Lucy's story

Lucy, 24, lives in Benfleet with her mum, Kate, and has an older sister called Vicky. She loves spending time with her assistance dog Molly and enjoys photography and social media.

Lucy was born with problems with her bowels, breathing and joints. When she was younger, each problem was treated in isolation with no-one seeing a connection between them.

She was a shy child who developed a passion for horse-riding when she was just 6 years old. As she got older, she lacked energy and felt uncoordinated. She knew something wasn’t right but was worried that people would think that she was just being lazy - so she told no-one and persevered, even though she was struggling.

By the age of 10, she was still going horse riding but her health was getting worse and she could barely lift her arms to wash herself and brush her hair. She did not have the energy to climb the stairs and had to shuffle up them on her bottom.

A year later, she finally plucked up the courage to tell her mum. “I was really shy and didn’t want the attention”, Lucy explained. “But the problems with my co-ordination and lack of energy were too much for me to hide anymore.

Her doctor referred Lucy to a physiotherapist to help her strengthen her muscles to maintain her mobility. She worked hard at keeping fit and active but her mobility declined and she became wheelchair dependent at the age of 14. “It was a big blow - I went from being an active person to someone stuck in a chair. I had to give up my horse riding and couldn’t go to school so I lost my friends and became isolated. I felt that I’d lost my life and I grieved for a year.” 

In 2008, Lucy was diagnosed with Complex Ehlers Danlos Syndrome. The collagen in her body does not work properly which affects the connective tissues that support the skin, blood vessels, tendons, ligaments, bones and internal organs. She suffered further complications when her gut and then later her bladder failed. As she could not absorb food or move it through her digestive system, Lucy had to be fed through a tube into her bowel. 

Lucy’s health problems had inspired her to be a doctor and so she focused on her education. The family had to fight to get the support she needed to study at home but Lucy refused to give up and even went on the internet to teach herself. She eventually passed 10 GCSEs with A* to C grades and went on to study science. She could only manage one hour at college a day as she could not sit up for very long and was deeply disappointed when her health problems forced her to give up after just six months.

Unfortunately, the feeding tube into Lucy’s bowel failed and she started to lose weight. In February 2011, Lucy – now 17 - was referred to a specialist in London who talked about fitting a tube into her heart called a Hickman line so her nutrition could be fed into her body through that. While she was waiting for her next appointment, her weight dropped to below 7 stone, her bone marrow started to fail and she had a heart attack.

Lucy’s mum, Kate, could see that Lucy was malnourished and dangerously ill but was struggling to contact the consultant through her local hospital. In desperation, she searched on the internet and found The J’s Hospice. She said: “I called The J’s for help and spoke to the senior nurse there who was fantastic. She could see that Lucy would die unless she got help immediately so she phoned the Consultant and persuaded him to admit her to the Royal London Hospital.

The Consultant didn’t expect Lucy to survive as she was so malnourished but she had the Hickman line fitted and was eventually well enough to return home. Lucy said: I would not be here now if The J’s Hospice hadn’t helped us - they really did save my life.

The J’s arranged for carers to visit Lucy two days a week. She said: “My J’s carers were very experienced and they also understood how important it is for young adults to have some social interaction - so we would have a chat and a laugh which was great. Meanwhile mum would be at work, confident that I was being really well cared for.

The J’s Hospice also acts as an advocate for the family. She explained: “The J’s Hospice really fights for us. If we are struggling, we get Bev, my J’s Nurse, on the case as she is very persistent. She knows the policies, who to speak to and what to say about my medication and care. Thanks to her, my quality of life has improved.

Because of her health problems, Lucy had to give up her dream of being a doctor. She didn’t realise how badly this had affected her until she was putting together her end of life plan with Bev. “I confessed that I was scared that I’d die and be forgotten. Nothing would be better because of me and my life would be worth nothing. I surprised myself as it had never been a conscious thought before.

Bev did not forget that conversation and persuaded Lucy to overcome her shyness and be in a short film about The J’s Hospice. Two years later in 2013, Together for Short Lives (the UK charity that speaks out for all children and young people who are expected to have short lives) was looking for a young person to speak at the House of Commons and The J’s Hospice asked Lucy, now aged 20, if she would like to do it.

I said ‘yes’ and my mum was surprised as she didn’t think I’d have the confidence. I spoke to around one hundred people about ‘transition to adulthood and palliative hospice care’. When I looked up from my notes at the end, the whole room erupted. It was amazing!

Lucy now lives with constant fatigue and pain so she cannot sit up and spends most of her day in bed. Her colon and bladder are not used any more so she has had tubes fitted to drain away the fluids and stop her from vomiting. Her bowel walls are now so thin that bacteria seeps through into her body, making her prone to infections that could kill her and she has had sepsis twelve times. 

She has a different care package so no longer has J’s Hospice carers, but stays in regular contact with the charity. She explained: “The J’s carers were very professional and really have set a high standard for the other carers that have followed them. I know that I can phone The J’s and someone will always be there for me. I refer my other healthcare professionals to them as they have my medical history and are my trusted advocates.” 

Volunteering has now become Lucy’s passion in life. Despite her complex health problems, she actively supports 14 charities and projects. In 2016, she was delighted to be awarded an MBE in the 2016 New Years Honours List for her services to young people with disabilities. 

Lucy is very grateful to The J’s Hospice for helping her to make every day count. I wouldn’t be alive now or doing my charity work without The J’s Hospice. When you have a life-limiting condition, your quality of life is really important and I now have a purpose. My health is horrendous and I would give up my illness in a heartbeat - but I’d miss all that I’ve achieved and the wonderful life that I have now. You can’t change the end result but you can make the journey better and The J’s Hospice has really done that for me.

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