A safe, accessible home for Emilia

Aim

Emilia is 4 and has suffered a major stroke which has left her unable to walk, talk and live a normal life. We are raising money to help her

I still can’t believe I’m writing all this, but here we go. Our daughter Emilia is four years old. She is bright, funny, stubborn, sparky, adored by her friends, and completely loved by her big brother Tommy. Until a few weeks ago, her life was finally opening up, until she had a massive stroke and almost lost her life. (more recent updates here: https://warrioremilia.substack.com/)

She has Down’s Syndrome and had already fought through more than most children ever should. She was born with a serious heart condition, an AVSD, and had open-heart surgery at six months old. Although that operation repaired the hole in her heart, it left her with severe valve regurgitation, meaning her body had to work far too hard. She couldn't grow, put on weight or develop.

After another heart operation in 2025, things changed. She grew stronger, she developed beautifully. After years of weekly physio at Small Steps, she finally started to walk just before her fourth birthday. She was going to nursery. And she was not just present - she was an active, playful, funny, much-loved classmate. Her new ability to walk seemed to unlock everything else. Her teachers hero-worship her.

Our lives were finally on the up. She was terrorising cafes and playgrounds like four-year-olds should, and had even started going down the slides backwards.

On a sunny Saturday on March 28, after a walk round the block with me and a lot of laughter, out of nowhere she had a major ischaemic stroke while eating a yoghurt. As I looked into her eyes, I saw her left eye looked left, her right to the right, and the alarm bells went off. She was drooling from one side, paralysed, not even able to get vomit out of her mouth.

The stroke nearly killed her. She was transferred to St George’s Hospital and needed emergency brain surgery to save her life. She had a decompressive hemicraniectomy, removing part of her skull to allow her brain to 'breathe' and relieve the pressure. PICU cocooned her for 10 days, saving her life, and she now has no bone flap (skull) on the left side of her head and must wear a helmet to protect her brain.

Having climbed the mountain of two heart operations, nursery, and finally watching her walk, the random stroke felt we’d got trapped in an avalanche: obliterating every inch of progress she had fought for, every inch we had fought beside her, and hurling us back to the beginning.

The stroke has left Emilia’s right side weak, unable to consciously use her leg or arm. She lost her speech. She lost her ability to walk. She has to be fed through an NG tube. She is now relearning how to sit, eat, talk, move, play and be herself again. 

Despite all that, amazingly, Emilia is still Emilia. She has survived. Her personality is still there. She laughs. She jokes. She is bright and alert. She is starting to talk again. She says “mummy” and “daddy” and some others are re-emerging. She is beginning to eat proper food. She is trying desperately to move. She gets frustrated because she knows what she wants to do - she wants to get up, play, chase her brother, go back to nursery, go back to being Emilia - but her body will not let her.

She is fighting with everything she has. Now we have to fight for the environment around her.

Why we are fundraising

Many friends and family have asked us to set up a way to help. I have hesitated for many weeks as I’m deeply conflicted with this process, and a bit ashamed, but the truth is that Emilia’s needs have changed overnight, and we are not financially prepared, at all, for the scale of what is now required.

We live in a small three-storey shared-ownership house. It was already awkward for family life. The kitchen is tiny and downstairs, next to a dining room which is now being converted to her bedroom. The living room is upstairs. The bedrooms and bathroom are higher up again.

Before Emilia’s stroke, that was merely inconvenient, but now it’s shown how disruptive it is to normal family life. Our dining room is being turned into a makeshift bedroom for Emilia. It is just a room. There is no bathroom. Washing her means carrying her up two flights of stairs. Moving her around the house means carrying a newly disabled child who has no bone flap on one side of her head, needs a helmet, has poor trunk control, and cannot currently use the right side of her body.

Our family life is now split over floors. Mealtimes are difficult. Equipment is difficult. Washing is difficult. Rest is difficult. Safety is difficult. It is all a nightmare.

We also have Tommy, Emilia’s big brother, who turns 11 soon. The pair were inseparable and still are - she depends on him. He has been through complete hell, and during the weekdays was mostly without his mum, dad and sister. Now we’re back, but our lives will inevitably revolve around Emilia’s care. We want him to have a family home that is not completely dominated by crisis, stairs, equipment and fear.

Alongside donations (perhaps even in place of) we are trying to solve the housing problem created by Emilia’s stroke in the least irresponsible way possible. The ideal solution would be a suitable accessible home now, funded by a private secured loan or similar arrangement, with us paying a set amount per month and contractually committing to repay the balance from future inheritance when received. We would obviously only do this through solicitors, with proper security for the lender and clear terms protecting Emilia’s stability. I know this is all unlikely, but I also know people are generous and want to help others. Maybe this is one of those occasions.

What Emilia now needs

We do not yet know how much Emilia will recover. We hope with everything, and believe in her completely, but are aware this is a long, uncertain road. Even though she’s surprised everyone at the progress she’s made, we still have to be realistic about what she needs now.

Emilia will need years of physical therapy, occupational therapy, speech and language work, educational support and specialist help. She may need wheelchair access, supportive seating, specialist equipment, safer washing facilities, and a home layout that allows her to be part of normal family life rather than carried up and down stairs all day.

The goal is simple:

To give Emilia the safest, calmest, most practical platform possible to recover, and to give her the best chance of getting back towards the little girl she was becoming.

What the money would help us do

We are setting a target of £75,000.

That is a huge amount of money. We know that. It’s also only scratching the surface. But it reflects the scale that Emilia’s stroke caused overnight.

The money would give us options we currently do not have. It would help us explore and fund the best route for Emilia’s future, whether that means adapting our current home as far as possible, securing a more suitable wheelchair-accessible home, funding specialist equipment, or contributing towards the physical, educational and therapeutic support she will need to rebuild her life.

The money would help with:

• Urgent equipment and home-safety needs
• Specialist therapy and rehabilitation support
• Assessments, surveys and professional advice
• Making our current home safer and more workable
• Creating downstairs living, washing and care options if possible
• Moving costs or a deposit towards a more suitable accessible home
• Giving Emilia a home environment where therapy, family life and recovery can happen every day

We are also working with local occupational therapy services. They are helping with a bed and seating. We will explore every formal route available to us. But we already know that the gap between what can be provided and what Emilia may need is likely to be huge.

This fund is about that gap. It is about safety. Recovery. Dignity. Family life. And giving Emilia the best possible chance.

Why home matters

Recovery does not only happen in hospital or therapy rooms but in the ordinary moments of everyday life.

It happens when Emilia can sit with us at the table. When she can play with Tommy. When she can practise movement safely. When she can rest properly from the profound neuro fatigue. When she can be washed without fear. When she can be part of family life without being carried between floors.

A safer home will not magically fix what has happened. But the wrong home can make everything harder, slower, riskier. And the right home could give Emilia a platform to fight from.

Emilia

Before the stroke, Emilia had only recently learned to walk. That achievement had taken years. It was huge.

She loved nursery. She loved music, books, colours, games, being outside, and playing with Tommy. She was funny, determined, cheeky, charming and SO MUCH FUN. She had worked her butt off to get where she was. In a moment, so much of that was taken from her.

Now she has to learn again.

To sit.
To move.
To use her right side.
To speak.
To eat.
To play.
To walk.
To be independent.

We do not know how far she will get. Nobody does. But we know Emilia. She has fought all her life. She charms and surprises everyone who meets her. She has already survived something that could have taken her from us. She is still here. She is still laughing. She is still trying.

So we want to give her every possible chance. Thank you for helping us give Emilia a safer home, a stronger recovery, and the best possible chance of becoming herself again.

Funding method

Keep what you raise – this project will receive all pledges made by 24th June 2026 at 1:26pm