Our Blog

Raif’s story

Published on: 17/12/2025

When a relative first mentioned Chestnut Tree House, Lynsey didn't want to hear the word 'hospice' in relation to her child. But as her son Raif became progressively more unwell, she discovered just how much support Chestnut could give.

My son, Raif, was my second baby. All through my pregnancy, I told myself that this time, we knew what we were doing. I was going to be a much more relaxed mum this time around, and I would be able to enjoy it more.

Lynsey cradles baby Raif, with daughter Joni wearing face paint

As it turned out, new motherhood would be very different second time around – but not in the way I was expecting. My husband Patrick and I were just getting ready to leave hospital with our newborn son, Raif, when he had his first seizure.

In the weeks that followed, our lives changed beyond all recognition as Raif became progressively more unwell. Nevertheless, when a relative first mentioned Chestnut Tree House, I didn’t want to hear it. No parent wants to think of their child needing hospice care. What I wish I had known back then is just how much support Chestnut can give. If I had, I would have asked for their help sooner.

I had a normal pregnancy until 34 weeks, when my midwife noticed that my bump had stopped growing. After further tests at the hospital, everything seemed fine, but they decided to induce me the following day, at 37 weeks. Raif passed all the checks to go home, and it was only by chance that we were still on the ward when he stopped breathing. That was the start of our emotional rollercoaster.

He was rushed to the Special Care Baby Unit and the next time we saw him – what felt like hours later – Raif was in an incubator attached to all sorts of wires. They’d done a CT scan, which showed some anomalies on his brain. We were transferred to NICU (neonatal intensive care) and referred for neurology and genetic testing.

Patrick, Lynsey, Raif and Joni in the pool at Chestnut Tree House

Waiting for a diagnosis

It’s hard to describe the next few weeks because, against the background of intense worry and stress, we had a new baby to care for. Our daughter Joni was three at the time, and we were trying to keep things normal for her too.

There was this weird sense of not knowing what the future was going to hold. He was just a tiny baby, so we couldn’t tell whether he was meeting his milestones or not. In the end, we tried to park our worries and act like everything was normal.

When Raif was two months old, we were told that geneticists had discovered a mutation to his COL4A1 gene, which is responsible for collagen production and affects the brain, kidneys and eyes. At that point, we didn’t know what Raif’s life would look like and how significantly he would be affected. His condition was so rare, they couldn’t tell us very much. The two things I do remember them saying were that he wouldn’t be able to play contact sports and that it would be vitally important to track his milestones.

In the weeks that followed, we hit some feeding issues. Raif was being sick a lot, and we just couldn’t get enough milk in him, so we went back to hospital. It was during that stay that we started noticing other things – for example, Raif was nearing four months old, but he lacked muscle tone and couldn’t lift his head.

That was when my sister-in-law mentioned Chestnut Tree House. She was trying to tell us about respite and all the other care that was available, but I shut the conversation down because I wasn’t ready to hear the word ‘hospice’ yet.

Struggling to cope

After that, we were in and out of hospital many times. A simple cold would make Raif very poorly, and it felt that his condition was accelerating so quickly that the system didn’t have enough time to catch up.

I remember a conversation with the neurologist in Southampton when we were on the paediatric intensive care unit, and that is when it became clear to me that Raif wasn’t going to have anything approaching a normal life.

On one of our longer hospital admissions when Raif was eight months old, a Chestnut nurse came to see us and told us all about the facilities – the hydrotherapy pool, the play park and the horses in the fields. It sounded like somewhere we could actually enjoy time together as a family.

And by this point, day-to-day life was very difficult. Raif now had a feeding tube, which required a whole other level of care. Because of his apnoea – a condition where breathing stops and starts – and the risk of seizures, we had to watch him all the time. Patrick and I were functioning on about two and a half hours sleep a night. Worst of all, Raif was very distressed a lot of the time. We couldn’t put him down, ever, and he didn’t sleep properly. I think the hardest thing was that we couldn’t ever comfort him.

We ended up moving in with my mum because we just couldn’t cope any more.

She called Chestnut and very quickly, they’d invited us for lunch and a tour.

Coming to Chestnut and meeting the team

Not long afterwards, we were in hospital again.  With all these hospital admissions, the question was always how bad it was going to get. This time, our community consultant came and had a chat with us. She didn’t think Raif would be able to get through another intensive care admission and it was time to talk about what happened next. By this time, we had a Chestnut nurse and her support was invaluable because we needed someone to talk to. Things were moving too fast and we could never explain anything to friends while things were unfolding. We were living in a different world to everyone we knew.

When we came to stay at Chestnut we had just been discharged from another lengthy hospital stay in Southampton. We had been given more bad news during this time and had left with nighttime ventilation for Raif – which he hated.

Staying at Chestnut that summer was the first time during the summer holidays we were all able to be together as a family and feel that we were in safe hands. The weather was beautiful, and we were finally able to sleep. Finally, we could have conversations without having to explain medical terms, and the team really listened to us.  My daughter loves swimming, and Chestnut was the first real opportunity that she and Raif could use a pool together. Raif relaxed in the water, and it was wonderful to see Joni happily splashing about with the inflatables and Disney tunes playing in the background. We also loved that the team would do art with Raif and we treasure the pictures we have from that time. They felt like the things my daughter brought home from pre-school and that was so special.

Entering palliative care

By the time he was ten months old, Raif was under the care of the palliative team. We had some very heavy appointments and although they never knew how long Raif would have, they did describe what might happen when the time came to say goodbye.  The appointments and admissions slowed down slightly at this point, and it was clear the medical team around Raif were trying to give us some time to just be a family.

We booked on to events at Chestnut, had more respite stays and went to the Saturday swimming sessions.  We even managed to stay out of hospital to celebrate Raif’s first birthday at home.

Towards the latter end of November 2023, Raif started to have seizures again and we soon found ourselves back in our local hospital.  Our community consultant and the palliative team visited and delivered the blow that it was time to go Chestnut Tree House for end-of-life care.

It was clear that Chestnut would do whatever they could to help us make memories and support us as a family. Joni asked for a movie night, so we watched Nativity on a big screen in the bereavement suite. We had our dinner and popcorn sitting on blankets on the floor in Christmas pyjamas which was very cosy and special.

It is too difficult to describe the day-to-day reality of knowing your child’s life is ending.  All the time I was thinking “This is what breaking feels like.” What I can say is that with the support of the team at Chestnut, we were able to be emotionally present in every moment to enjoy all those last days, hours and minutes with our son without falling apart.  It was the approach to Christmas, and we were able to be together as a family, in a cosy environment.

We called Raif “Mr Cuddles” because he always wanted to be held, and the Chestnut team made sure we were able to cuddle him right up until the end. We were even swimming as a family up until four days before Raif died.

Moving forward through grief

In the last four or five days, things started changing. In the end, the nurses didn’t have to tell us, we could all see what was happening that day, but they stayed tactfully close for when we needed them.

After Raif died, we stayed at Chestnut for another two or three weeks. While we were at the House, we could control when we saw people. When we’d go home, I’d hear the postman and dread having to talk to somebody. Chestnut gave us somewhere to shelter from the rest of the world before we had to leave and go home without our son.

Afterwards, Patrick and I had counselling together and it was so helpful to explore our own and each other’s feelings in a more structured way. Joni was too young for counselling at the time, but the team gave us advice on how to talk to her about it. And I have to say that she is doing pretty great: in fact, she’s probably easier to talk to about Raif sometimes than other adults. I’d like to think that with the help of the team at Chestnut, we’ve set the right tone for her.

We will forever be grateful to Chestnut for the comfort, normality and support they provided us during the most difficult time of our lives, and we truly treasure the memories we made there as a family of four.