Ellie’s story

Ellie Palmer, six, from the North Norfolk village of Mundesley, lives with sister Eva, nine, mum Laura and her mum, Ellie’s grandmother, Heather.

Laura is full-time carer to her girls, who are both home-educated, and Heather helps with care, too. Laura tells their story…

“Ellie’s a determined, feisty, cheeky little girl, with big blue eyes and the loveliest giggle. She has a steely determination and there’s no chance of ever convincing her to do something she doesn’t want to! She and Eva adore each other, and snuggle up together in Ellie’s bed each evening for a story.

“Ellie has complex medical needs. She has Down’s syndrome, Ollier’s disease (a very rare bone disease that occurs in one in every 100,000 people), autism and complex lung and airway issues. She is dependent on a non-invasive ventilator to help her breathing.

“Her medical needs mean she has a lot of care needs. She becomes very breathless when she tries to move around, she doesn’t recognise when she needs to stop and needs constant monitoring.

“Ellie cannot walk. She bottom shuffles mostly, with the odd bit of cruising between furniture. The Ollier’s disease means she is more at risk of breaking bones. She broke her thigh bone just bumping down a couple of inches onto her bottom. Ellie has absolutely no sense of danger and needs constant supervision to keep her safe, wears splints and uses a wheelchair.

“As she has an unsafe swallow, Ellie is tube fed. She likes cheekily putting things in her mouth, so keeps us on our toes!

“Ellie needs all care throughout the day and night. One of us sleeps in her room with her to ensure she’s safe overnight. Ellie can become poorly very quickly at times and doesn’t call out. Her oxygen levels are monitored overnight as well as being on her ventilator.

“I’d known something was significantly wrong with Ellie for a very long time. Getting professionals to listen was increasingly difficult, to the point I moved her care to a different hospital and the diagnoses were made. The consultant told me she was very concerned for Ellie and what the future would hold, and that she didn’t think she could make it better, but would try her best.

“I felt overwhelming sadness, mixed with anger and also relief I hadn’t been losing my mind for all those months I’d been trying to get doctors to listen. Our community children’s nurse had talked about EACH and she thought Ellie may meet the criteria for support, so I agreed to her making a referral.

“To be honest, I didn’t think Ellie’s referral would be accepted. Having support from EACH is the club you never want to qualify for, but now we are we’re so hugely grateful for the support and what that means to us as a family.

“We’ve accessed different support from EACH. We have care days at The Nook. This means we go there as a family for the day and have support from a member of the care staff. The girls have a fabulous time playing in the sensory room and soft play area, deafening everybody in the music room and Ellie loves doing bottom shuffling laps of the care floor, closely followed by a member of our care team carrying her ventilator. My girls love Sarah and Emma, the nurses that support us and keep them on their toes when we’re there.

“I first saw The Nook at the open day for families in 2019 and was blown away by the space and welcoming feeling. We started attending for days a couple of months later. There’s always a smiling face, a listening non-judgemental ear and a hot cuppa, which is a rarity at home! The roast dinners are gorgeous, too!

“I’ve accessed counselling services. It’s really beneficial. Michelle the counsellor is lovely and being able to talk to somebody independent who’s knowledgeable and knows how challenging life can be has been a huge help. The experiences I’ve been through with Ellie have changed me as a person, destroying the self-confidence I had and any self-belief I knew my child better than anybody. Michelle has helped me rebuild this. It’s definitely an ongoing project, but it’s a positive one and it’s also helped me think about the future, and what I would like that to be like, whatever the outcome is.

“We also have support from the long term ventilation (LTV) team. This has been invaluable, attending hospital appointments, helping chase any issues that need resolving and understanding any concerns I have about Ellie. It’s really reassuring having that support, especially from a team that do all they can to get to know both Ellie and our family. It’s a truly holistic approach that can most definitely be lacking at times when you have a child with complex needs and lots of different professionals involved.

“Having the support network we have from EACH has really helped us as a family and improved our quality of life.

“The girls’ care needs have such a huge impact on daily life. Planning anything is a challenge and life frequently changes so quickly. Trying to do ‘normal’ family things is really difficult. When we’re at The Nook for the day I feel like I can just be their mum. I haven’t got to worry about housework, cooking or anything as it’s all sorted and we can concentrate on making memories. The girls are safe and extra pairs of hands and eyes means the stress is greatly reduced. The girls love their sessions and ask most days to go to The Nook and play on the slide.

“The future is uncertain and it’s helped being able to talk openly about what we think we want to happen. Knowing we have the support from EACH and from friends we’ve met through our times at EACH is reassuring. The care from EACH feels like a big hug when you really need it most.

“Life without EACH would be significantly more challenging, both on a daily basis and when thinking about the future, and dealing with the uncertainty. The whole family benefits in so many different ways.

“Some of our favourite memories of our time at EACH are the Christmas panto at The Nook. The girls loved it and Ellie’s face was a picture.

“Ellie loves the freedom The Nook provides her with. I still smile at the vision of Sarah the nurse following Ellie as she bottom shuffled under the chairs and tables. Ellie thought it was brilliant.

“COVID has obviously impacted upon our ability to access services. We’re unable to attend The Nook for care days. We’ve been shielding since March and it’s certainly made life more difficult than usual. It’s felt like we’ve been forgotten about by many elements of our usual life, but not by EACH. We’ve had phone calls and emails checking in to see how we are, support from Charlotte the LTV nurse when I was concerned about Ellie and ongoing support from Michelle the counsellor, all of which have been greatly appreciated.”

Last updated July 2020

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

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