“If I could describe Noah’s Ark in three words it would be a gift from god.”
Noah’s Ark Children’s Hospice exist to help babies, children, and young people with life-threatening or life-limiting conditions, and their families, make the most of every day.
They are here to enable those they support to enjoy life as children, rather than as patients, as families, not just as carers. Partnering with London NHS trusts, they have built a home, a community, and an expert team to make that difference. They are one of the UK’s leading children’s hospices, providing care for over 350 children and their families every year.
One of the children they support is Destiny-Rae.
Destiny-Rae, four, can often be seen whizzing around The Ark in their ride-on toy car with a HUGE smile on her face. She’s an excellent hide-and-seek player, loves to bake cookies and will rarely say “no” to a visit to the ball pit. Like her name, she is a ray of sunshine.
But it hasn’t always been this way for Destiny-Rae, who has endured more in her four short years than most of us do in a lifetime. If you saw Destiny-Rae on a good day, it would be hard to believe that not so long ago her mother, Maria, didn’t know if her baby would live to see the next day:
“I’ll always remember that conversation with the doctor when they said that they didn’t think she’d make it through the night. As a new mum, I had to think how I was going to process not having a child anymore.”
When Maria found out she was pregnant, she was overcome with emotions and dreamt of all the things you’d expect as a first-time mum. But when Destiny-Rae was delivered prematurely by emergency C-section, doctors instantly rushed her away.
“That’s when I broke down in tears, my instinct was telling me something wasn’t right.”
Destiny-Rae was diagnosed with chronic kidney disease. Trying to make sense of the confusing medical jargon, all Maria knew for certain was that her baby was extremely poorly. Doctors told her to prepare for the worst.
During this time Maria took comfort in her family, her faith, and her church. Week by week, Destiny-Rae battled new obstacles, and at six weeks old, she defied the odds and fought off meningitis.
“From that moment I knew I had a warrior on my hands.”
The first year of Destiny-Rae’s life was spent in hospital. Like many of the children they support, these difficult times didn’t stop her from smiling, a smile which still lights up The Ark today.
Noah’s Ark Children’s Hospice’s motto is ‘making the most of every day’. Since their referral, from Great Ormond Street Hospital, this is what the care team has helped Destiny-Rae and Maria achieve.
“Noah’s Ark came into our life just over a year ago now and it was a breath of fresh air, like a relief.”
Maria is Destiny-Rae’s full-time carer and manages all her medical needs. Like many in her situation, initially, she didn’t feel comfortable leaving her child with anybody else. Whether it was the possibility of infection risk from her stoma bag, or a child accidentally pulling on her dialysis line, the risks of day-to-day life filled Maria with dread. However, with Noah’s Ark, things were different. As Maria explains:
“Once I came to The Ark, I was like, ‘wow!’, they deal with stoma bags, they deal with lines, everything. It was like a weight lifted off my shoulders.”
The Ark and the breadth of services available have been a haven for Destiny-Rae and Maria, with specialist nurses, play, activities, and therapies all under one roof. With Noah’s Ark’s support, Destiny-Rae can experience and enjoy life as a child, rather than as a patient, and Maria as a mum, not just as a carer.
“She calls it nursery. I love it, she says ‘we’re going to nursery today’… she’s got her friends here, she’s got her favourite nurses.”
She has lots of fun at The Ark and when travelling is difficult, they also provide support in the family home.
“Noah’s Ark understands that travelling can be difficult, especially trying to keep her occupied in the car. When travelling is hard, they come to my house and play with her for four or five hours.”
Care within the home means that when Destiny-Rae is playing and having fun, Maria can go and do the weekly shopping or get the laundry done.
“Any service that I think I may need; they’ve always been more than willing to accommodate and help”.
Having recently celebrated her fourth birthday, Destiny-Rae has grown into a cheeky, energetic, and beautiful little girl. Greeting everyone at The Ark with a smile, she leaves a mark on everyone she meets.
“For me, Noah’s Ark are a gift from god. After everything they’ve done for us, that’s the best summary I can give.”
Noah’s Ark Children’s Hospice rely on the generosity of the local community to enable them to continue supporting children just like Destiny-Rae. Without regular support they may not be able to provide this care to other children in the future.
For ONLY £1 each week, you can play Your Hospice Lottery to give them a regular income that they can rely on.
It is unimaginable to imagine a world where you may have to say goodbye to your child. But, with Noah’s Ark’s support families will never feel alone.