Danielle was known for her lovely smile. No matter what she was going through, she loved to smile. Danielle was diagnosed with a rare progressive brain disorder and died at just 17 years old. This is her story.

Naomi House & Jacksplace supported Danielle and her family by providing respite breaks and by giving specialist nursing care as her health deteriorated. Naomi House & Jacksplace were there for the family in the last days of Danielle’s life. 

Danielle’s mum, Lisa, shares their family story with us.

Danielle’s personality was brilliant. No matter what she was going through, she was always smiling. She absolutely loved Minnie Mouse and Frozen and she adored Barney the dinosaur.

Little girl in pig themed fairground ride, wearing red coat, smiling
Girl sat in wheelchair wearing pink wig and fancy dress, smiling

Danielle had been a very healthy and active baby, but we started to have some concerns when she would bang her head on the floor. It wasn’t until she started nursery at the age of two that it was picked up that her development was delayed, and she wasn’t reaching her milestones.

Danielle’s communication was quite poor, and she couldn't properly communicate until she was around four and a half, but when she did talk, she talked! She wasn’t easy to understand, but people who knew her well knew what she was saying.

Little girl holding onto a bar in playground, smiling
Sisters hugging in living room, looking at camera, smiling

From around the age of five, Danielle started to have drop seizures. These are a certain type of seizure where you can suddenly lose muscle strength and fall to the ground. Danielle would be playing with her pram and then just drop to the floor and then get back up.  It was like someone was pulling her feet from underneath her.

We lived our lives day by day and, as time went on, Danielle’s seizures became worse and she could have up to 100 a day. Danielle gradually lost the ability to walk and talk and do anything for herself.

Danielle’s health gradually deteriorated, and she developed an unsafe swallow. She initially had to be fed via a nasogastric tube and then she had a gastrostomy button put in and liquified food went directly into her stomach. Danielle’s room became like a medical room; we had oxygen, suction, medication, you name it, we had it.

Girl in bed snuggled in Mickey Mouse fleece blanket holding onto Barney the Dinosaur toy, looking up

Danielle needed 24-hour care and in addition to the carers who helped us at home, we were given the opportunity to visit Naomi House.

We started to visit Naomi House when Danielle was around 12 and we absolutely loved it. Everyone was so kind.

At Naomi House, Danielle used to love riding the assisted bikes, it was just her favourite thing. She would say, “bike, bike!”  and we would say, “put your helmet on and do it up under your chin” and she’d say “under your chin chin” and then she would laugh.

She loved the hydrotherapy pool and we loved to go in with her. In my bedroom, I've got a picture of Danielle and me in the hydrotherapy pool at Naomi House & Jacksplace.

Mum, dad and daughter wearing swimwear, hugging in hydrotherapy pool smiling at camera
Mum holding daughter wearing armbands in hydrotherapy pool, laughing

Sometimes we didn’t stay at the hospice with Danielle, we would say it was her little holiday. Even though Danielle was having seizures and being fed by a nasogastric tube, we didn’t worry about leaving her at Naomi House without us, because we trusted the care team to look after her. Often, we would come home and just have a few days peace and sometimes we would even go away.

We enjoyed doing activities with Danielle, like swimming in the hydrotherapy pool and spending time in the sensory room. I would even get into the ball pit with her, and we would throw the balls at her dad! Danielle loved taking part in arts and crafts sessions, and playing with the play dough was one of her favourite activities.

It was nice to be able to do these things with her, without having to worry about her medical needs, as I trusted the care team and knew they would care for Danielle.

Little girl with pigtails relaxing in ball pit
Girl sat in swing laughing next to nurse in blue polo shirt in garden on sunny day
Male volunteer in maroon top playing instrument and singing next to girl laughing with him
Girl in wheelchair smiling on accessible roundabout in Naomi House garden

One of the things that Danielle absolutely adored was having a bath! We didn’t have a bath at home, just a wet room, so when Danielle stayed at Naomi House it was something that she loved to do.  She would have a big smile on her face and would love to splash and get everyone wet!

Being able to stay at Naomi House gave us a break from all the medical things we had to do for Danielle. It was nice to just spend time with Ian and my older daughter, Chloe, whose childhood had been severely impacted, as most of our time had been focussed on Danielle.

Mother hugging and surrounded by two daughters in arm chair, smiling

The hospital genetics team were trying to find out what was causing Danielle’s condition. It took years to reach a diagnosis and, by the time they did, she wasn’t the Danielle we knew when she was little. She couldn't talk and she couldn't do anything for herself.

In December 2020 when Danielle was 15, we went for a meeting with her neurologist and genetic consultants in University Hospital Southampton (UHS), but it wasn't the meeting we were expecting. We were expecting them to give us the diagnosis and say that it wouldn’t change anything. But we were told that Danielle had Dentatorubral pallidoluysian atrophy (DRPLA), which is a rare progressive brain disorder, and her life expectancy would be 8 – 16 years from when the symptoms first showed. It was a big shock for us.

Dr Kate Renton, the doctor who works for Naomi House & Jacksplace and UHS, was a great help to us, she was amazing. She was always so honest with us, and we appreciated that.  

Most health professionals enter their field with the aim of making people better, and understandably find it very hard when a cure is not possible. My role as a doctor working in paediatric palliative care is to support the patient, their family and other health professionals in finding a way forward. Honesty is key here and in order to be compassionately honest with families, there has to be trust. Joint posts between the NHS and Naomi House & Jacksplace help support the building of this trust, by enabling doctors and nurses to see patients alongside their lead health professionals in any setting. This helps in building a relationship with the family. It was a real privilege for me to have been able to support Danielle and her family on their journey.

— Dr Kate Renton, Consultant Specialist in Paediatric Palliative Medicine
Little girl sat in swing smiling holding onto swing ropes

Danielle’s health was deteriorating, and her breathing became erratic. She started having oxygen at home when she needed it, mainly when she had seizures or during the night. As well as having a lot of chest infections, she was also having dystonic attacks, which are uncontrolled muscle spasms and can be very painful. Danielle had a number of stays in hospital where she was given oxygen and medication to help control her pain.

In November 2022, Danielle was having trouble breathing and was rushed to hospital in an ambulance.  She was taken to the high dependency unit where they did everything they could, but her breathing was very erratic.  She was on drips and medication to try and help keep her lungs open, but she was struggling.

Danielle deteriorated quickly and was in a lot of pain and, within 24 hours, we were told by the doctor that she was coming to the end of her life.

She was moved to a private room by herself so that she wouldn’t be disturbed.

Danielle’s consultant, the epilepsy nurse and Dr Kate from Naomi House & Jacksplace came in and, between us, we had to make the decision whether to take her to Naomi House and let her go peacefully, or keep her in hospital on medication that wouldn’t change the outcome.

We made the decision that Danielle should go to Naomi House for end-of-life care. But that evening, her oxygen levels went right down to 10% and she was so poorly.

Naomi House building

My family all came to the hospital to say goodbye, and Danielle almost died in my arms.

The intensive care team managed to stabilise her, and she was then taken to Naomi House by ambulance.

We followed on to Naomi House and, as I hadn't slept for 72 hours, I was told to go and get some sleep. By then, Danielle was having morphine to ease her pain and help her relax.

Mum holding daughter, kissing her on the cheek, in hydrotherapy pool

I kissed Danielle goodnight, and I gave her permission and said it’s OK, you can go.

— Lisa, Danielle's mum

At about 10.30pm we heard a knock on our bedroom door. The care team had been trying to wake us, but we had gone into a deep sleep, we were so tired. By the time we got to Danielle, she had already gone, but in a way, I think she wanted it that way. I don't think she wanted us there, she just wanted to go peacefully.

We were so glad that Danielle was staying at Naomi House rather than hospital for her end-of-life care. It was something that we had put in her Advance Care Plan as we knew Danielle would be more comfortable.

I didn't want her to die at home and I didn’t want her to die in hospital. We just wanted it to be us with Danielle. She was our daughter and we wanted it to just be me, her dad and her sister with her.

Danielle was settled into the Butterfly Room, Naomi House’s bereavement suite, and we were able to spend as much time as we wanted with her. We stayed for nearly a week at Naomi House after Danielle passed away, and the care team looked after us so well. I don't think we would have got through that first week without them. Coming home would have been very hard with all of Danielle’s equipment still being there. We were grateful that we didn't have to think about that while we were at Naomi House.

Toy on bed Butterfly room
Butterfly suite open doors

A lot of the staff knew Danielle very well and they were so caring towards us, they were absolutely brilliant. If we needed to talk or needed to cry, they were there for us. The Family Support Team were there to help us too and it made such a difference.

When I first went into the Butterfly Room, it made what was happening real. Danielle was lying on the bed and the care team had placed her favourite Barney and Frozen toys with her and there was soft music playing. We had brought some photos from home and we put them up around the room.

We talked to Danielle as if she was still with us. Ian would sit on the rocking chair next to her and give her a kiss every night and say, ‘I’ll see you in the morning’.

It was nice to just sit there with Danielle for as long as we wanted. If we wanted to see her in the middle of the night, we could, there were no restrictions and that's what made it so much better for us. We came to the realisation that Danielle wasn’t coming home with us.

Danielle died on the 30th November 2022 and being at Naomi House made the world of difference to us and we can't thank them enough. The way the care staff are with the children and the parents is brilliant, they put in 100%. They are just so loving and caring.

Girl with big smile on her face with hair in bunches and green and white bow

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