“Go once with an open mind” is this mum’s advice to other SMA parents wondering if hospice care is right for their child

Here at Together for Short Lives, we’ve been blown away by all the incredible stories of hope and determination that are circulating in the wake of pop singer Jesy Nelson revealing that her twin daughters have been diagnosed with the degenerative muscle condition Spinal Muscular Atrophy (SMA).

Our hearts go out to every parent and family member living with the reality that preventative treatments now exist that were not available at the time of their child’s diagnosis. But they have also been warmed by the stories of families being cared for by compassionate professionals in our sector, who are determined to help make special memories, support children to fulfil their potential and exceed expectations about what was medically thought possible for someone with this condition.

We are proud here to share Connie’s story. After being diagnosed with spinal muscular atrophy (SMA) as a baby, Connie and her family found vital support from Little Havens children’s hospice, a place that has helped them navigate the challenges of the condition whilst creating precious memories.

Connie’s story

Emma describes her pregnancy with Connie as “a dream.” Everything had gone smoothly, and the early checks after Connie’s birth were positive. But when Emma saw a photo of Connie wearing a babygrow a friend had sent, she noticed that she was lying very still. “She wasn’t moving as I expected her to,” she says. When her sister later gently asked the same question, Emma realised something might not be right.

After further tests, the family were given the news that Connie had spinal muscular atrophy (SMA). Emma admits her first reaction was almost relief. “I’d never heard of SMA and asked, ‘OK, what do we need to take for this?’ But I was told there was no cure. I vividly recall calmly thinking that there is no way I’m losing her.”

Not long after, Connie began treatment at Great Ormond Street Hospital. At just nine weeks old she received spinal injections that might help slow the condition. “It was so hard to watch,” Emma says. “But after that first injection, she lifted her arm up. It was incredible.”

The early months were still incredibly difficult. Connie later needed a feeding tube, and the family worked hard to secure a place on a clinical trial in the United States for a new daily treatment. The impact was life-changing – Connie began to talk, hold her head upright and gain muscle strength. But Emma admits the emotional toll was huge. “We were in a very dark place. I was grieving for the life I thought Connie would have.”

At this time, the family were introduced to Little Havens Children’s Hospice – somewhere that would soon become a second home to the family, a place that helped the family feel less isolated and more supported.

At first, Emma resisted the idea. “I said no thank you – I don’t want to go there,” she recalls. But on a beautiful sunny day, Emma, Tim and Connie visited Little Havens. The hospice was surrounded by beautiful grounds, and they were greeted warmly with tea and cake. “It was nothing like I thought it would be!”

Today, Little Havens has become like family. For Emma and Tim, the hospice has helped them move from a place of fear and uncertainty about Connie’s future to one where they can focus on giving her a happy childhood and making precious memories together.

“Everyone knows Connie so well,” says Emma. “The staff are genuinely special people. You never feel like it’s just a job to them – they really care.”

Connie enjoys imaginative play during her stays. She loves big cats and often creates games with the Care Team. “One time I walked in to find her and a nurse playing the Frog Olympics,” Emma laughs. She also makes the most of the hydrotherapy pool. “Being weightless gives her freedom of movement she doesn’t have anywhere else. Hydrotherapy is expensive, so having access here means so much.”

For Emma and Tim, respite care has been just as valuable, giving them time to rest and recharge as a couple, while knowing that Connie is in safe hands. “One weekend of respite here, for the first time since Connie was born, Tim and I sat down and watched two films right through. It might sound small, but it meant the world.”

As Connie has grown older, she has joined the Youth Group at Little Havens, where she enjoys playing laser tag and indulging in tasting her favourite food – bacon. Just as importantly, she has met other children with different conditions. “It helps her realise she’s not the only child in the world who uses a wheelchair or suction machine,” says Emma.

She encourages other families to take that first step. “Go once with an open mind. You’ll be surprised by the atmosphere. It’s bright and happy, and everyone’s having fun. You find your people here. There’s no pity, no sympathy – just acceptance. People see Connie for the bright little girl she is.”

Reflecting on the generosity that keeps Little Havens going, Emma grows emotional. “Your donations are doing something magnificent. They give families like ours memories, hope and strength to carry on. Connie would be devastated if she couldn’t come here anymore. We’d be lost without Little Havens. It’s not just respite – it’s learning that happiness is possible, even with a life-limiting condition. From the kitchen team to the Care Team, everyone here makes a difference. I’m so glad we gave it a chance.”

Caring around the clock for a seriously ill child can be exhausting and isolating, and families can feel pushed to their limits. Being able to access lifeline support from their local children’s hospice can provide families with a fundamental support network and tailored care, along with acquired knowledge with which to make informed decisions, find moments of joy and take control of their lives.

At Together for Short Lives, we support children’s hospices through our fundraising and advocacy efforts, professional events and above all our Family Support Hub, where families and their care teams can seek direct support and advice.

If you’re curious about children’s palliative care and whether it’s right for your child, reach out to our helpline today for an informal chat or browse our online resources.