Amaia's Story


"It’s not all doom and gloom. It’s a break from normal, everyday life and it’s so much fun – for all the family."
 

When TV producer Nacressa Swan first heard the phrase ‘life-limited’ applied to daughter Amaia, she naturally feared the worst. But a year on, the family celebrated a very special occasion, and Amaia was at the heart of the festivities.

At 11 months old, Amaia was referred to Martin House by consultants at Leeds General Infirmary. Though unable to make a definitive diagnosis, doctors were clear that her seizures and developmental delays were a result of a neurodegenerative condition that would shorten her life. For Nacressa, the future seemed bleak:

“As well as the seizures, we were aware that Amaia had stopped doing ‘normal’ things, like laughing and smiling. When the consultant first mentioned a referral to Martin House, we thought she was going to die imminently because she’d been referred to a hospice.”

Amaia first stayed at Martin House in late 2014, and the visit left Nacressa with very different feelings. In addition to providing vital respite care and practical support, the hospice has given Nacressa a way of enjoying time with Amaia without the caring responsibilities:

 “Having a child with a life-limiting illness can be isolating for a parent – you can’t drop them off with a friend or neighbour because they’re not trained in how to care for them. Being the main carer, you end up always thinking about the next feed and the next medicines.

 “Coming to Martin House is great for lots of reasons: I don’t have to think about when everything is due, we learn a lot about equipment, and we find out different ways of playing with Amaia.

“She loves playing with water and going in the hydro pool, and likes going over the bumps outside in her pram. She also really enjoys music, particularly the sound of bells, and the team work with her to make things during her stay.

"We get a lot out of the little things she makes for us. The perfect amount of time for us to stay is three nights: we arrive on the Friday night, and by the Sunday I feel as if I’ve had a good rest!”

In July this year, Nacressa married her partner of 14 years, Duncan, in North Wales. With the family’s support, Martin House arranged for Hope House Children's Hospice, near Oswestry, to care for Amaia over the wedding weekend, allowing her to attend the celebrations on the Saturday with an care team worker:

“We couldn’t have had such a big day without her being part of it. We always wanted a real family wedding but this was more than we could have hoped for. It was just amazing.”

“If I spoke to someone worried about accessing Martin House, I would tell them to give it a go. It’s not all doom and gloom. It’s a break from normal, everyday life and it’s so much fun – for all the family. It’s like going on holiday!”