Meet Elaine and Willow
Elaine and her daughter, Willow, both feature in our recent From That Moment fundraising campaign film. Willow is six and we have been supporting the family since Willow was 18 months old.
We asked Elaine to describe Willow and she said:
‘Willow is really fun! She is so great to be around, is really kind and has so much energy. She loves animals and is cool and sassy.’
The film covers the journey from when Elaine found out she was pregnant to her life with Willow in the present.
Elaine talks about her first memories of Willow, she said:
‘She was a great baby and hardly ever cried, she was really happy and joyful. At the time we lived in quite small flat, but we took her to the park quite a lot and went for lovely walks. I’ve got really good memories of that time.’
The film also covers when Elaine found out that there might be a problem with Willow’s development. She said:
‘At first, Willow was hitting all her milestones and doing really well, but then we noticed that her crawling was regressing, and she was moving awkwardly and then not crawling at all.
We were referred to Great Ormond Street Hospital. I remember lots of noise and babies crying. The consultant conducted tests on Willow’s legs and didn’t really get any response. Then, out of the blue, we were told that something was really, seriously wrong. As you can imagine your mind is all over the place. You’ve suddenly gone from having this really beautiful, happy, healthy baby to everything changing. Eventually, at 18 months, she was diagnosed with a rare condition called Type 2 Spinal Muscular Atrophy (SMA).
Elaine goes on to describe SMA:
‘It’s where the muscles don’t get enough protein due to a defective gene which makes the muscles wear easily. The diagnosis meant that Willow would never be able to walk. When we were told the diagnosis, we were given an information pack and it was such a weird feeling to hold the pack and think – this is my daughters’ future. Afterwards we went to the park near the hospital and I remember looking at all these kids playing and thinking, ‘What is Willow’s future going to hold for her, how has this happened?’
We asked Elaine to describe the impact Willow’s condition has had on their family and Elaine said:
‘Willow’s condition has been tough on us. We’re a very tight family and I’m very lucky that they’re very supportive. At the moment Willow and I are temporarily living with my mum and stepdad and their house is not adapted for a wheelchair.
We were originally told that Willow wouldn’t crawl until she was nine or ten, but she has smashed that completely, when she first started crawling we were all cheering! Of course, there are times when things are difficult, but we find a way to carry on. Willow is such an inspiration. She’s my beautiful daughter and I’ll do anything for her. We get through each day and take each day is it comes.’
When asked about how Noah’s Ark Children’s Hospice has helped her, she said:
‘Noah’s Ark have been fundamental to our journey, they have been amazing. They have given us lots of information, help and support. Without them I don’t know where we would have been or where we would have gone to. They have created so many amazing memories for us. Willow loves coming to Noah’s Ark, as soon as she gets through the door, she forgets all her worries.
When asked about the services that we provide Elaine says:
‘We were introduced to our Family Link Worker and they wanted to learn everything about us as a family and especially what Willow would enjoy and what she needed. Willow’s father died when she was 3 so I came to Noah’s Ark for advice on how to manage this challenging time. I needed help with how to navigate it and our Family Link worker was just there for me and has been amazing.
‘The people at The Ark are just wonderful, you always get a smile, you always get a big hug. I just always feel at ease and relaxed in The Ark and Willow is the same and seeing her smile makes me really happy. She loves Soft Play and the Sensory Room and we both enjoy the Hydrotherapy Pool, which is really good for Willow’s legs, and she has such fun there as there are loads of lights and bubbles. She also loves the Accessible Playground and Nature Walk. Willow loves everything about Noah’s Ark, it’s her favourite place.
They also have a Holiday Lodge, which is fully accessible, and we spent a week there in the summer and we had the best time! Everything is thought about, it’s immaculate and it’s right by the beach. One night, out on the terrace, we even saw a shooting star, which is an amazing memory.
We asked Elaine what events she and Willow enjoy at The Ark and she said:
‘We always come at Christmas time and see Santa and have lots of lovely memories from that. The staff always put so much effort into all the events at The Ark. You know when you go to a Noah’s Ark event it’s going to be really good. They also have great events for parents and grandparents, my mum does yoga and I’ve got a parent workshop coming up which I’m really looking forward to.’
Elaine spoke about what she loves most about Noah’s Ark and she said:
‘Noah’s Ark know all the children individually and their strengths and they just make each moment count. I feel so lucky that we’ve got Noah’s Ark behind us, cheering us on. They are like family to us and the support they give us is so important but it’s also great fun, we always have fun when we come here.’
We would like to take this opportunity to say a BIG thank you to Willow and Elaine for sharing their story. You can watch our campaign film below.
Thank you to 10 Group for producing this film pro bono.