“It’s been quite a journey. Noah’s Ark has been with us every step of the way.” Freya’s far exceeded her prognosis, but her mum Elina is aware that further challenges could come their way and Noah’s Ark will be there with them every step of the way.

There are fewer than 100 cases of the rare genetic condition CCMS in the world. At four weeks old, Freya was discharged from Great Ormond Street Hospital on end-of-life care. Her prognosis was days, maybe weeks. As she approaches her fourth birthday, this bubbly, fun, outgoing little girl has become the life and soul of any party.

Freya’s mum, Elina, has received support from Noah’s Ark Children’s Hospice since Freya was just three or four months old:

“The Noah’s Ark carer started supporting us when Freya was in hospital. At first it was just giving us a couple of hours of normality to go out, have a coffee or a walk, get some fresh air. Noah’s Ark were the only people – including friends and family – who I could leave her with. That respite made such a difference – and not just in the first weeks in hospital, but also in the first two years when you, as a parent, are with your child 24/7. Noah’s Ark gives you the only break you ever get from that. It means that, even briefly, you can be normal”.

The practical support that was offered was also really significant to Elina and her husband, including the help that they received moving from a highly impractical first floor flat to accommodation that is much more suitable for a family living with such a complex condition. Whilst Elina is happy to engage with the authorities – she was a lawyer on her way up the corporate ladder before falling pregnant with Freya – the additional practical support that Noah’s Ark provided ensured that she could get the best for her child. It enabled her to get the right care package, housing and access to social services, whilst also enabling Freya to attend nursery:


“One thing that will stick with me is how Noah’s Ark’s nursing team came into the nursery and gave the team there tracheostomy training. Without that, there’s no way that we’d feel confident that Freya could even go to nursery and that training just wouldn’t even exist if Noah’s Ark hadn’t done it”.

Watching Freya play now is like watching any other 3-year old  – scooting along in the garden, watching YouTube and loving toy cars, all the while smiling away. She’s been able to express this exuberance at the Noah’s Ark family days, which have also given her mum the opportunity to meet other parents and share experiences, which she describes as ‘invaluable’.

Freya’s far exceeded her prognosis, but Elina is aware that further challenges could come their way, which is why, she says “it’s so important to have Noah’s Ark in your corner”. But her mentality is to live life to the full and live with the uncertainty, after all, “Freya could live to be 120 and I could get run over by a bus tomorrow. That’s why you have to live for every moment and take every opportunity.”