Why supporting Acorns Room to Grow Appeal is helping to keep Isla-Rae’s memory alive

ISSUE DATE: 12 October 2022

When Acorns Children’s Hospice launched its Room to Grow Appeal on 9 February to raise vital funds towards the major refurbishment of the charity’s hospice in the Black Country, one little girl and her beaming smile stole the show.

Isla-Rae and her sparkling green eyes, soft brown curls, and gorgeous grin captured the hearts of people across the Black Country.

But for her loving Mum Leah Ainge, the day captured a very special moment in time – one she will treasure forever.

Sadly, just three months after the Appeal launched, three-year-old Isla suddenly passed away. But her memory will live on as one of the faces of the Acorns Room to Grow Appeal; something that continues to bring comfort to her family, who were among the first to join the fundraising efforts.

And while Isla will sadly not get to experience the upgraded facilities when the hospice reopens in the new year, Leah says it means so much to know the refurbishment will ensure Acorns can continue to a be ‘safe place’ for families like hers long into the future.

Leah said: “Even though Isla won’t get to enjoy the new hospice, so many other children like her will, which is why we’ll continue to raise money for Acorns and tell our story because every family like mine needs Acorns.”

Leah was already mum to two daughters, Sienna and Lacey, when she fell pregnant with Isla in 2018. During early scans, doctors discovered Isla had talipes, commonly known as club foot, “but that was the only thing that was ever picked up,” Leah said, “everything else was fine.

“As soon as I had her, I knew something wasn’t right. She didn’t cry – you wait for it, but she didn’t. Her breathing wasn’t right, it was like she was grunting. Her colour wasn’t right either.

“And then the noises just stopped. I looked down and she wasn’t breathing. The midwife ran to pull the emergency cord and that was it, the room was full and they were resuscitating her. It was horrendous. I can remember it like it was yesterday.”

Newborn Isla was taken immediately to the neo-natal unit, with Leah unable to see her daughter for a number of hours: “I needed stitches so couldn’t be with her. I was just sitting there thinking, what the hell is going on? My mind was all over the place.” Tests confirmed Isla had a condition called persistent pulmonary hypertension of the newborn (PPHN). Her failure to cry at birth meant the pressure in the blood vessels of the lungs hadn’t stabilised. But it wasn’t until Isla began to have seizures that a formal diagnosis was given.

Leah explained: Isla had quite a few complex care needs. She had Lennox-Gastaut Syndrome, which is a type of childhood epilepsy, and PAID syndrome, a life threatening condition caused by brain injury.

“So as she grew, Isla didn’t meet the key milestones, she wasn’t doing anything a typical child should. She wasn’t feeding properly, she wasn’t putting on weight. She wasn’t holding up her own head.”

Isla’s condition meant that her health could deteriorate very quickly and in her short life, she was frequently in and out of hospital. 

“She’d be stable one minute and the next day fighting for her life,” Leah explained. “Every couple of weeks it was the same circle. It was horrendous. Her heart rate and oxygen levels would drop to single to figures and we’d think we were going to lose her.”

Knowing how fragile Isla’s health could be, her family treasured every moment they spent with her and embraced every opportunity to create special memories together, with a little extra help from Acorns Children’s Hospice in the Black Country.

“Having somewhere like Acorns meant the world to us,” Leah said. “We only used Acorns for about two years, but I can’t thank them enough. From the first moment we visited, we felt welcome straight away.

“It was really calming. It didn’t feel like a hospital or smell like a hospital. It’s a happy place.”

Isla would enjoy short breaks at Acorns, which would give Mum Leah and Dad Thomas the chance to spend time with her two big sisters. It also gave Isla the chance to have her own mini holiday away from home.

When Leah and her family learned of Acorns exciting plans to upgrade the spaces at the hospice where children like Isla spend precious time, one improvement in particular really struck a chord. Acorns in the Black Country is to become the first Acorns hospice to have piped oxygen in each room, recognising the increasing complexities of the children in the charity’s care.

Towards the end of her life, Isla herself required oxygen 24/7. Mum Leah knows only too well the positive impact these necessary improvements will have on children visiting Acorns.

Leah said: “We had so much kit to take every time we went everywhere. You couldn’t just get up and go. As well as her meds and feeds, we’d need to pack her oxygen tanks, which can be really heavy and take up so much space. So, I know what a difference it will make to have oxygen piped into each room.”

This is one of many reasons Leah’s family is supporting the Room to Grow Appeal, which aims to raise £750,000 towards the hospice refurbishment. Just over a month after Isla’s passing, Grandad Gary completed a 25-mile bike ride for Acorns and the Appeal in June.  

“Life would have been so hard without Acorns, we’re grateful for them every day. Even during Isla’s final days, Acorns was there and when it was time to go to the hospice, they did everything we wanted.

“The support we had was amazing. Isla’s sisters were taken care of and the nurses did everything for Isla, which meant that I got to just be her Mum and spend every moment I could with her.”

Leah and her family will never forget their ‘little angel with the best smile’. And thanks to the Room to Grow Appeal, Isla-Rae’s memory will live on in the hearts of the rest of the Black Country community too.

Around 230 families like Isla’s receive lifeline care and support from Acorns in the Black Country each year.

The hospice in Walstead Road, Walsall, is currently closed to enable the building to undergo its first major refurbishment in over 20 years.

The Room to Grow Appeal aims to raise funds towards a number of significant upgrades at Acorns in the Black Country, something the charity has been unable to do for many years due to financial constraints.

The improvements involve upgrading the children’s bedrooms at the hospice, which are used for children at Acorns for end-of-life care, symptom management, emergency and planned short breaks.

These spaces will be completely reconfigured to meet the complex needs of the children Acorns cares for and will include piped oxygen in each room.

There will also be a brand-new, purpose-built arts and crafts room, where children will enjoy the freedom of expression through art.

Amongst other improvements, the special bedrooms where families can spend precious moments with their child after they have died, the family care suite, and the expansion of the hospice dining room are all part of this exciting development.

To find out more about the Room to Grow Appeal, please visit www.acorns.org.uk/roomtogrowappeal


For more information or for interview, photograph or filming opportunities, contact the PR and Communications team:

David Chamberlain:
01564 825020 / 07817 612422 / david.chamberlain@acorns.org.uk
Nicki Robinson: 01564 825062 / 07814 302153 / nicki.robinson@acorns.org.uk
Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.

  • It costs £27,000 every day to run Acorns services providing care for children and support for their families. The charity relies heavily on donations to fund the majority of its activities.