Daniella’s Story

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Daniella’s Story

Hello, my name is Daniella. I’m a 27-year-old mum and I live in Westhoughton with my husband Julian, 32.

We’re just a normal family, but we’ve had to deal with a lot of heartache, having suffered the loss of our daughter, and then one of our twin boys.

I want to tell you how your local children’s hospice, Derian House, has been a light in the darkest of times.

Our story starts seven years ago in 2017 when Julian and I first got together. Just a month into the relationship we found out I was pregnant. I was only 21-years-old and it was a shock, but we were over the moon.

Sadly baby Ellie was stillborn at 36 weeks and it broke our hearts.

So when we found out we were expecting twins on what would have been Ellie’s first birthday we felt shock, excitement and fear all rolled into one.

Tommy and Arthur were born nine weeks early on 28 September, 2019 and were tiny, weighing just 3lb 6oz and 3lb 4oz. We took one look at them and fell in love.

The boys both suffered a bleed on the brain at birth and when doctors ran tests they found they had a gene mutation, which made their blood vessels prone to breaking.

We didn’t notice any real difference at first, but at about six months old we started to realise that they weren’t doing what they should have been. Eventually both boys were diagnosed with spastic quadriplegic cerebral palsy.

Finding out your child has a disability is difficult because you grieve for the life you planned.

But it turns out that children with disabilities are the most amazing children you will ever meet – they defy all the odds and they don’t give up.

Arthur’s needs were greater than Tommy’s, and during one particularly difficult three-month spell he would do nothing but scream – he wouldn’t sleep, he wouldn’t eat. He was on a lot of medication just to get through the day.

It put a real strain on the family and I felt more like a full-blown carer than a mum. This was when Derian House first came into our lives.

Their first overnight respite stay was heaven. We got to actually sleep for the first time in months! It allowed us to recharge and gave us the strength to carry on.

The whole family loved going to Derian House. Our favourite thing was the hydrotherapy pool. Tommy and Arthur were both water babies and absolutely loved it.

For that hour we were like any other family, just enjoying time with the children. It was magical.

The boys also loved the sensory room and the adapted playground. Derian allowed them to do all the things children do, but that they hadn’t been able to.

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“Losing one of your twins means forever grieving the things you’re never going to experience. Whenever Tommy reaches a milestone I think ‘that’s what Arthur should be doing now’.”

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“I would describe grief as like the ocean. Some days you’ll sink when the wave hits, and some days you’ll swim.”

The boys had distinct personalities.

Arthur was very cheeky and had a smile that could light up any room. He was a real mummy’s boy and was so courageous, with the heart of a lion. He loved Mr Tumble and anything silly.

Tommy was a massive telly addict! He has always been such a happy and loving little boy – I call him my little ray of sunshine. The boys adored each other and would fall asleep holding hands.

But then everything changed.

In May 2021 when the boys were 20-months-old, Arthur became unwell with a stomach bug. It was a Thursday night and I was up every hour with him through the night. He finally settled at 5.30am and we managed to have a couple of hours sleep. When I woke up in the morning, the boys were still asleep so I decided to leave them while I got ready for the day.

But something was nagging away at me, telling me to check on Arthur.

I went into his room and found him. He had passed away in the night. The bottom fell out of our world.

The rest of the day is a blur. The ambulance came, then the police. They took him to the hospital mortuary but I couldn’t bear to go. I’d done that walk once before with Ellie and I could not do it again.

Arthur had a beautiful rainbow-themed funeral and his coffin was carried in a horse-drawn carriage.

Losing one of your twins means forever grieving the things you’re never going to experience. Whenever Tommy reaches a milestone, I think ‘that’s what Arthur should be doing now’.

Tommy is four-years-old now and we still go to Derian House Children’s Hospice. Weekly counselling sessions are helping me to process my grief and Tommy still loves the pool.

Last summer the hospice even arranged for us to have a Disney Wish experience at a beautiful stately home where Tommy got to meet his hero, Woody from Toy Story.

Julian and I support Derian whenever we can. In March 2021 we did a sponsored walk from the Reebok Stadium in Bolton to Blackpool Tower in just one day, raising thousands of pounds to help other families like ours.

I still have hope for the future. Tommy is making good progress and I know he will go on to do amazing things. He still loves watching TV and can munch through three packets of Skips a day! To us he is perfect.

I would describe grief as like the ocean. Some days you’ll sink when the wave hits, and some days you’ll swim.

It will always give me a great deal of comfort to know that we still have a little piece of Arthur within Tommy.

Having the support of people around me, like those at Derian House, gives me the strength I need to carry on. I can’t put into words how grateful we are.