South Australian mums Kara Reek and Ella Stratton are uniting to help grieving mothers

There’s one type of club no mother ever wants to be signed up to – membership is lonely, isolating and full of heartache. But a duo of Adelaide mums is now offering a little hope and understanding.

Kara Reek wants to support mums recovering from the heartache of having a child placed in palliative care, inspired by the “delightful” daughter she lost. Picture: Ben Clark

When keen netballer Kara Reek watches other people’s teenage daughters playing, it tugs at her heartstrings.

For, she never got to share the sport she loves with her beloved only daughter, Lila Ellis, who passed away several years ago after spending her final months in pediatric palliative care.

Lila was born with a condition called hydrocephalus, or fluid on the brain, and underwent several operations as a newborn, including at just two days old when a shunt was inserted to drain the build-up of fluid. Aged one, she had a cranial facial operation.

“When she was born she had quite a swollen head because there was a lot of swelling on the brain … you have four ventricles that pump fluid around your brain and one of hers didn’t form properly,” Mrs Reek said.

Little Lila Ellis was born with fluid on her brain. Picture: Supplied

Little Lila didn’t meet her developmental milestones, was unable to speak, had limited vision and was diagnosed with diabetes insipidus – a condition that affects sodium levels and causes fluids in the body to become out of balance and needs to be carefully managed.

She also suffered from cerebral palsy down one side of her body and required a wheelchair from age five.

Still, the health challenges didn’t stop her from growing into a “delightful” child and teenager.

“She was just a very happy girl with a great, great giggle, a great laugh and a great sense of humour … kookaburras now remind us of her,” Mrs Reek said.

“She had a really lovely love of life … she loved music, she loved ten pin bowling, she loved dancing – and the sound of my high heeled shoes. She loved Katy Perry and Tones and I.”

But as she entered her teenage years Lila started to experience seizures and complications associated with her diabetes insipidus worsened.

“At 14, she spent about 11 days in hospital and the doctors came and talked to me, using words like ‘end-of-life’ plans and palliative care,” Mrs Reek said.

Lila passed away in 2020 aged 15, leaving her mum, stepdad Dave Reek and younger brother Aaron devastated.

“Delightful” Lila celebrating her 14th – and last – birthday with her mum, stepdad Dave and younger brother Aaron. Picture: Supplied

Her mum’s grief was intense and multifaceted, mourning both for the much-loved child she had lost as well as the life Lila didn’t get to experience.

“Realising all the things she hadn’t been able to do … I don’t think the weight of that hit me until we lost her,” Mrs Reek said.

“I was a netballer, so seeing other kids play netball looks at a bit different now, like, ‘I wish my little girl played netball’.

“I am very different to what I was before losing Lila; for the first 12 months, I was just sort of trying to function and get through it … I feel like mums bear the weight, it’s just a different connection.”

A keen netballer, Kara Reek is heartbroken her daughter never had the chance to play. Picture: Supplied

A young Lila with her loving family. Picture: Supplied

She found running in nature helped, to both clear her head and numb her pain.

But it was an unexpected delivery from the HAS Foundation, an Adelaide charity supporting families of children with life-limiting conditions, which proved profound.

“Mother’s Days are one of the hardest days and I was just so blown away to receive this little parcel with a personalised note for me on my first (one) without Lila,” she said.

“I broke down … ‘wow, someone actually cares about me, and they don’t even know me.’”

Mrs Reek, and later her son Aaron, now 13, started volunteering for the charity and she soon met its co-founder Ella Stratton – who lost her son, Hunter, when he was 12 – and a deep friendship was formed.

“Ella was like, ‘Well, how did, how did you find us?’. I burst into tears and told her my story … it was very raw but it was nice to just have somebody who understood and got it,” Mrs Reek, who now works at HAS, said.

Their strong connection made perfect sense to Mrs Stratton, who founded the charity with her husband Jarrad in honour of their firstborn – HAS standing for Hunter Alfred Stratton.

“We both know first-hand how lonely grief can feel,” she said

Ella Stratton’s firstborn Hunter suffered seizures as a newborn and was expected to live past one … but he defied the odds and almost got to celebrate his 12th birthday. Picture: Dean Martin

When baby Hunter was eight weeks old, the Strattons were told he would not live to see his first birthday, although the precise type and cause of his illness was never known, as a newborn he suffered as many as 100 “uncontrollable seizures” a day.

But the “beautiful soul and beautiful-natured boy” defied the medical odds, dying in 2014 aged 11 after about two years in palliative care.

“Our boy lived and loved life until he was nearly 12-years-old … (when) the time finally came for us to say goodbye, it broke our hearts,” Mrs Stratton said.

“Hunter was the most beautiful, gentle little soul, despite all of his adversity, he was always very content, he appreciated all the little things in life and really taught us the importance of the little things … he loved his family and his footy.

“He was so brave and courageous … he got through every battle that was put in front of him.”

Ella Stratton with baby Hunter. Picture: Supplied

Hunter faced every challenge he faced with “courage and bravery”. Picture: Supplied

Mrs Stratton is now driven to help other families going through “the unimaginable”.

“Although we miss Hunter every day, we’re using our experience to help families in similar situations ‘live for the moment and love for a lifetime’,” she said.

“A mother’s love is pretty special; I feel extremely privileged and grateful (to have had Hunter as a son) with everything he has taught me … I am also unbelievably grateful for my other two boys (Tex, 18, and Oakley, 16); they have healed my heart, they’ve filled my heart.”

# The loving mums are now joining forces to offer a series of workshops created especially for bereaved mothers who have been part of the Women’s and Children’s Hospital’s palliative care service, to provide “practical tools to assist in their grief journey”.