One year on from ‘No Time to Lose’
One year on from the release of our No Time to Lose film, we caught up with some of the families who starred in it.
Sparks-funded research into cooling treatment saved Joseph’s life when he was only a few hours old. Now two years old, Joseph is “talking more, walking, making friends at playgroup and generally doing really well,” says his mum, Kerry. “He’s got a couple of little friends that he makes a beeline for when we go into playgroup – he meets them sometimes in the week and he loves them. If you ask him about them he gets excited.”
Since the lockdown, Joseph’s grandad has come to live with the family. Joseph absolutely loves having him around. “He loves that we’re all at home, so we’re all able to play with him,” Kerry adds. “He’s doing lots of painting and he’s doing lots of baking, playing with his toys – he loves it." Kerry says her top tip for parenting in lockdown is keep busy and remember that every mess will get cleared up eventually! Staying positive, she adds: “Definitely an upside to all this is that we’re all at home together as a family.”
Reflecting on what Sparks means to her family, Kerry says: “It was Sparks-funded research that discovered the cooling treatment. It’s because of Sparks that we’ve got Joseph today so if anyone donates its brilliant that they do. It’s donations in the past that allowed them to develop the cooling technology.”
Ethan celebrated his third birthday on 14 January with a few friends and a bouncy castle. Like Joseph, he had the cooling treatment, due to research funded by Sparks, when he was just a baby.
His Mum, Reah, tells us: “His recent activities whilst in lockdown have consisted of paddling pool fun, bubbles in the sun, sowing seeds, hopscotch, an Easter egg hunt and spending time with our neighbouring cat whom he adores.”
With his endless imagination, Reah says: “Ethan’s always looking for new things to do. He’s an absolute blessing to have, but boy is he a handful! He’s full of energy constantly, and so intelligent."
Born with a syndrome without a name (SWAN), Sadie’s collection of conditions is so rare that her family don’t have a diagnosis. Since last April, Sadie’s made lots of progress with her health and development.
Her mum, Nicola, explains: “She’s ready to hopefully have her tracheostomy removed soon. About a month after Sparks filmed Sadie, she was able to tolerate a speaking valve. It’s a device that goes into the tracheostomy and allows her to talk and vocalise, because the tracheostomy prevented her from talking before. She’s saying a few words and it’s been lovely to hear her laughing, crying and making noises.”
She had some complications with her feeding tube and needed an operation last year, meaning the procedure to remove the tracheostomy was delayed. She’s also had a few illnesses requiring antibiotics, but Nicola says Sadie’s “getting stronger every time now. She seems to be fighting everything off better than she was before.”
She started nursery in September for four days a week in the afternoons, with Nicola attending as a carer. Nicola says: “She’s developing really well! She loves all her teachers, she’s made some friends, she’s socialising, interacting really well and learning lots.”
In lockdown, Sadie loves being at home with her big sister, Isla. Nicola says: “She’s become quite challenging, like a bull in a china shop! She loves playing in the garden, on the swing and trampoline, and she’s started trying to run when we take the dog to the park every day. She spends a lot of time with Isla… It’s nice because she loves her so much. And Sadie’s started copying her, which is a great sign that she’s learning.”
When asked for her advice to parents in lockdown, Nicola says: “I think you just have to take it day by day because there’s nothing we can do about the current situation. But obviously get as much support as you can – I’ve been going online and talking to other families who are going through the same thing. It can feel like you’re on your own because you’re just in the house with the kids, but other parents are feeling exactly the same! There are so many ideas online to help look after children like Sadie.”
Lucy has pulmonary hypertension – when high pressure on the lungs causes a strain on the heart. Since the No Time to Lose launch, she has started school, had her fifth birthday and had her medical backpack removed, which you might have read about on our website.
Her mum, Claire, says: “When Lucy started on the wee backpack, this was the only way forward. We never thought she wouldn’t need a backpack anymore. It’s a blessing really – we just keep hoping that the cure will come one day.”
Before lockdown, Lucy was enjoying school, making lots of friends. Claire says: “The teachers are really supportive and I know we can trust them to look after her as much as we do. When Lucy was at school with the backpack on, there always had to be a teacher walking around with her. Since her backpack’s come off, she can meet friends in the yard in the morning, so she’s getting more freedom and joining in."
Claire and the family had a holiday planned for Easter, but the caravan sites are all closed, so they made their own holiday in the driveway! “We’re going to pretend we’re away and holiday in the caravan with the blinds down. We might turn the heating up, and draw a beach and stick it to the windows,” she jokes.
Highlighting the importance of Sparks’ work, Claire says: “I live with this every day so it’s always important to us, because without research there might not be a cure.” Lucy’s dad, David, adds: “It doesn’t even matter how much it is, if people can just contribute something, a pound is better than nothing.”
Sparks Urgent Appeal
Many of our fundraising activities have been cancelled or postponed due to the ongoing crisis. We’re therefore launching an urgent appeal that will help the charity continue its support of child health research at a time when it needs that support more than ever.
There is no time to lose. We need your support, so that children with rare and complex conditions like Joseph, Ethan, Sadie and Lucy are not forgotten in the current crisis and the fight for their future continues. You can donate now, easily and quickly, by clicking here.