11 September 2025
Meet Helen and Simon. Their seven-year-old daughter, Ruby, has Rett Syndrome, a rare genetic neurological and developmental disorder. Ruby has complex needs, uses a wheelchair and needs an Eyegaze device to communicate, as she is non-verbal.
Noah’s Ark started supporting the family in 2023 through a dedicated Home Support Volunteer for Ruby and respite stays where she has Specialist Play and Creative Therapy sessions. Simon and Helen are part of the parent groups, and all the family come to Noah’s Ark’s Family Days.
The Moment Everything Changed
Simon talks about their experience of ‘that moment’ and says: "Our daughter was diagnosed during lockdown, on zoom. Covid was a strange and unusual time for everyone, but it was obviously a really difficult time for us. The geneticist told us to sit down and get a coffee and that he has something to tell us and then came the news. It takes a little while to come to terms with it and given that it was lockdown, things were already quite strange, so it took a little while to settle in."
Helen agrees, saying: "I think one of the things that made it harder was hearing that she had a diagnosis of Rett Syndrome after being told four months previously that it wasn’t and feeling relief and then to have it all turned around again just a few months later, it was quite surreal. You can't possibly understand all at that moment. It's just the start of a really long process to understand what it means day to day, now and into the future for Ruby."
Simon says: "You read up about the diagnosis and the more you read, the more you know about what’s to come in your daughter's life and in our lives, the more it hits you. It’s hard not to get down about it, to be honest. It's hard to keep positive but we did because we couldn’t change it but what we can do is make her life is as positive and as fun and fulfilled as possible. And that's what we started to strive to do."
Helen adds: "We also have some support from Rett UK, which is a charity that supports families who are affected by the syndrome. They say to remember that Ruby is not just somebody with Rett syndrome, she’s also a little girl who just happens to have a condition that makes her life a bit different. Being reminded of that is helpful but it’s also fundamentally true, she is her own little person and has her own likes and dislikes. She’s also very happy and really sociable but she also has this condition that means she will never walk or talk, which is really sad. But you have to focus on the happy times and the times that she smiles and what makes her smile."
Simon adds: "And that's where Noah's Ark comes in, because they definitely make her smile and in general they support us through respite care, activities and linking with the wider community, things that allow us to be happier and have more smiles with Ruby."
Support From Noah’s Ark
Helen says of the support the family receive from Noah’s Ark: "One of the really important things that Noah's Ark has given us is the opportunities to do things like a normal family, because the environment is all set up and everybody is so welcoming and they want to make it fun for her. We can do the sorts of things that she just doesn't get the opportunity to do otherwise like parties, fun days and going to the zoo and all the things that other families probably take for granted, they make it happen for us and we can feel normal for a short time. Noah’s Ark gives us the opportunity to have a little slice of normal life. "
Simon agrees and says: "Noah’s Ark give us so many opportunities to do things with Ruby that would be difficult without help and support. They have created a heck of a lot of joy and given us a lovely social network and friends for Ruby. When we drive up to Noah's Ark, our daughter laughs, she's really, really happy. When she sees the staff in their red tops, she immediately associates it with fun."
About Ruby – A Little Girl Who Loves To Have Fun
Simon goes on to talk about Ruby’s personality and says: "Ruby is awesome, everything makes her laugh. She's got a wicked sense of humour, and she's a bit of a joker and loves TV and cartoons. I think her natural state of being is a smile. She’s always looking for fun, just like any other kid."
Helen adds: "Ruby loves to play, and she loves bubbles and she’s very sociable. She loves spending time with other people and getting involved and can get a bit frustrated when she can’t take part in some activities."
Simon agrees and says: "That’s why Noah’s Ark are so good because there's nothing that she can't do when she's there. Ruby can take full part in everything at The Ark again which she doesn't always get to do elsewhere. She’s also formed really close bonds with some of the staff and volunteers at The Ark and you can see that, as she leans in and nuzzles them, which is Ruby’s way of showing affection."
Eyegaze Technology
Ruby uses Eyegaze, a technology specifically designed for children with limited communication skills. Simon talks about some of the ways that Ruby has used Eyegaze: "Ruby dressed as a superhero for a disco at The Ark, she worked with her Home Support Volunteer to make all the decisions about her costume using Eyegaze and came up with this great tutu with LEDs all around it. She looked awesome and had the best time. Ruby’s Eyegaze is literally her voice, without it, she has none. Noah's Ark have been great working with Ruby to find her voice and start expressing herself, which is just fabulous."
Respite Care
Simon talks about how Ruby’s diagnosis has changed their lives, he says: "I'm Ruby's primary carer and had to give up work to care for her. Noah’s Ark provides great support for people in my situation, and they give us respite breaks so we don't lose ourselves and so we’re not just defined by Ruby’s condition. We know that when Ruby is at The Ark that she’s happy and she’s being looked after, they give us the opportunity to be a family as well as just carers."
Helen adds:
"Looking after a disabled child, you're always on duty and there's never a time that you're not thinking or worrying about Ruby. When we drop her off at Noah's Ark, we know that without a doubt, she's going to be so well looked after. She's going to love it and she’s going to have the best time. It is the only place that we can leave her overnight and feel completely at ease and relaxed. That feeling of being able to relax is completely priceless. Noah’s Ark have saved our sanity and our lives. We genuinely don't know where we'd be without them."
Simon says: "In that moment when Ruby was diagnosed, compared to now, the difference is enormous in the way that we can deal with it. We feel as though we can make her life as positive as possible and a large part of that is the effect of Noah's Ark and their services and support. All the wonderful things they do for our daughter. It's brilliant."
Helen goes on to talk about the care that Ruby needs, she says: "A typical day at home with Ruby starts off in the morning as she can't get herself out of bed as she can’t do that for herself. We have to do everything for her because she literally cannot do anything for herself. She’s totally reliant on us, but it’s totally worth it. When you go in to see her in the morning, she will roll over and give you the biggest smile to say good morning and that's what makes it all worthwhile."
Simon adds: "It takes about an hour and a quarter to feed her and doing activities outside of home takes a bit of planning." Helen agrees and adds: "Sometimes you go places, and you don’t get such a great reaction but at Noah’s Ark you can always guarantee that Ruby is welcomed and made a fuss of."
Helen talks about how much Ruby loves coming to The Ark, she says: "On Ruby’s Eyegaze she has a Noah's Ark page and there's a button for bedroom, so that’s her way of telling us that she wants to come to Noah's Ark for respite. Respite is very kind of clinical term, but it’s more like a little mini break for her that she absolutely adores and it gives us some time just to breathe, recover and have a little bit of fun ourselves."
Simon says: "Being a carer 24/7 can wear you down. When we drop Ruby at Noah’s Ark for the first day we sleep and then the next day we do some positive, nice things together. We go to the pub or to the cinema, just normal things that people take got granted. Noah's Ark to us isn't just somewhere that our daughter can go and have a good time, it’s like an oxygen mask on a plane that's in trouble."
Support From Other Parents Who ‘Get It’
Helen talks about some of the parent focussed support they receive from Noah’s Ark and says: "They run some great groups for parents as well. Simon is in the dad’s group, and they go out for a meal or to the pub. In the mum’s group, I've been to a spa day and craft activities. It’s just really nice to be able to meet other families and hear other stories and feel a little bit less like we we’re alone."
"Everyone at Noah’s Ark has a story to tell and it’s nice to be able to share those stories with the other families. Your close friends and family they're understanding and wonderful and supportive, but they don't they don't get it like Noah’s Ark."
We would like to take this opportunity to say a BIG thank you to Helen, Simon and Ruby for sharing their story.
You can find out more about our From That Moment fundraising campaign here.
