Our wish for baby Willow to visit Cork before she died, came true

Baby Willow, who had a very rare illness, passed away last month, but has left precious memories for her parents, writes CHRIS DUNNE
Our wish for baby Willow to visit Cork before she died, came true

PRECIOUS BABY: Willow died in November, at just eight months old. She was diagnosed with Smith-Lemi-Opitz, a very rare and life-limiting condition

EVEN though baby Willow was only in the world for a very short time, the eight-month-old little girl made a lasting impression on everyone she met.

“If you knew Willow, you’d never forget her,” says her mum, Fiona Harrington, 28, from Bere Island, who lives in Donegal with her partner, Dwaine Rodgers.

Willow passed away on November 23, 2019, having only been born in March this year.

Fiona and Dwaine will never forget that the children’s ambulance BUMBLEance made their dream come true when it provided transport for Willow to take her for a precious sleepover in September to her granny and grandad, Ann and Colum, who live on Bere Island in West Cork.

“BUMBLEance made our wish come true,” says Fiona.

Willow, pictured with her parents Fiona and Dwaine. 
Willow, pictured with her parents Fiona and Dwaine. 

“I wanted to take Willow home to my parents for one night. Our kind, lovely nurse, Helen, organised the trip for us.”

Willow, the little girl with courageous sea-faring genes from Cork and Donegal, made a big impression.

“My parents really bonded with Willow,” says Fiona, whose dad, Colum, owns Bere Island Ferries.

“All the family, my nieces and nephews, and our neighbours came over to meet her. We took loads of photographs. It was a lovely occasion to remember forever, all thanks to BUMBLEeance.

“Willow required oxygen. She had a feeding tube and she was on morphine. So the long drive from Donegal to Bere Island was not an option for us.”

Willow, all ready to meet her grandparents, travelled in style. BUMBLEance provided a six-seater plane which picked up Willow, her parents, and her nurse from Carrickfinn Airport, next to the family home, and flew them to Kerry Airport, where they were met by the charity’s ambulance on the runway.

At Bere Island, the captain of the ferry, grandad Colum, brought his precious grand-daughter and her mum and dad safely to shore.

“It was a lovely trip,” says Fiona.

She was intent on thanking BUMBLEance for their wonderful gesture that meant all Willow’s family got to spend precious time together to create indelible memories, before she passed away.

“The memories will stay with us forever,” says Fiona.

She took on a challenging 11km sea swim accompanied by her father in the safety boat from Owey Island to Cruit Island, raising €30,000 for BUMBLEance and more than €5,000 for the Jack and Jill Foundation.

Willow died in November, at just eight months old. She was diagnosed with Smith-Lemi-Opitz, a very rare and life-limiting condition.
Willow died in November, at just eight months old. She was diagnosed with Smith-Lemi-Opitz, a very rare and life-limiting condition.

“Dwaine waited for me on the pier,” says Fiona.

“I’ve always swam in the pool a bit but I wasn’t really used to swimming distances in the sea and I’d only done a bit of swimming in the sea when I worked in Greece seven years ago.”

But like mother, like daughter, Fiona has tough, resilient genes. She was going to go the distance for BUMBLEance and for the Jack and Jill Foundation, come hell or high water.

“I wanted to do a hard challenge,” says Fiona.

“It had to be a tricky challenge for me so that I got extra for that.”

When the going got tough, Fiona kept going.

“I thought of both charities and how much they had done for us,” she says.

Dwaine must have been very proud of her.

“Yes, and he took lots of photographs!”

The pair were intent on supporting BUMBLEance and the Jack and Jill Foundation.

“BUMBLEance arranges trips to hospitals and medical appointments for children all over the country,” says Fiona.

“The children’s ambulance is kitted out with children’s DVDs, night lights and music and it is the height of comfort, making long journeys so much easier for sick children. We couldn’t believe it.”

Fiona and Dwaine couldn’t believe it when the Jack and Jill nurse came to their home in Kincaslagh, Donegal, giving them a well-earned break.

“And we got a night’s sleep! The Jack and Jill nurse sat up with Willow and she made life that little bit easier,” says Fiona.

“Willow had to be fed every three hours. Each feed took an hour. The support of the nurses was brilliant.”

The family looked forward to the visits.

“We’d always wonder, which one of them is coming tonight?”

And Willow made another friend. “The nurse became a friend of the family,” adds Fiona.

She and Dwaine will always remember the kindness and loving care they received from the Jack and Jill Foundation and from BUMBLEance, who made their dream come true. The money Fiona raised will help make other families lives a little easier when life is hard.

Willow, here for a short time, has left a lasting legacy.

Fiona Harrington, aged 28, from Bere Island who lives in Donegal with her partner, Dwaine Rodgers and Baby Willow
Fiona Harrington, aged 28, from Bere Island who lives in Donegal with her partner, Dwaine Rodgers and Baby Willow

“She was our first,” says Fiona.

“When Willow was born on March 30 in Cork, it was a worrying time. It was a waiting game to find out what might be wrong with her.”

Fiona and Dwaine, who met in college in Cork, had an inkling that they would have a resilient little fighter on their hands.

“We had picked the name Willow a week after I found out I was pregnant,” says Fiona.

“We stuck with that one. We didn’t have any boys’ names!”

Willow started fighting from the moment she was born.

“She was in the neo-natal unit in Cork for six weeks,” says Fiona.

“Then she was transferred by helicopter to Letterkenny Hospital.”

The tiny tot was diagnosed with a very rare life-limiting condition, Smith-Lemi-Opitz.

“Only a very small handful of infants in the world have been diagnosed with the condition,” says Fiona.

“We were told to bring Willow home and create some memories.

“When we got home first, we stayed at home,” says Fiona.

“Willow had no immune system and she was very prone to infections. She had to be tube fed and she was on oxygen. For the first few weeks she was really sick.”

Baby Willow, did a lot of living in her short life.
Baby Willow, did a lot of living in her short life.

Fiona and Dwaine hoped for the best while preparing for the worst.

“When Willow was three months old, we nearly lost her,” says Fiona. “She was really sick.”

But Willow rallied. “She began fighting again,” says Fiona.

She and Dwaine fell in love with her all over again.

“We really loved her then,” adds Fiona.

The threesome were ready for road and ready for the sea.

“We took her on the Arranmore ferry,” says Fiona.

Willow made her mark wherever she went.

“She got to meet lots of people who all fell in love with her.”

As Willow got braver and braver, her parents got braver and braver.

“We went further and further,” says Fiona.

“Willow saw real-live bears in Wild Ireland in Donegal!”

She did a lot of living in her short life, and she created a lot of loving.

“All the nurses in the hospital loved her,” says Fiona.

“One of them always stayed with her and if they left for a minute, she would cry. She wanted the nurse to come back.”

Willow knew what she wanted.

“She never gave up until she got it,” says Fiona.

Willow was a bright little baby.

“She loved Christmas lights,” says Fiona. “Her eyes lit up when she saw them.”

Even though a light has gone out in Fiona’s life and in Dwaine’s life, they hold on to the brightest memories of their perfect daughter who left so much love behind her.

“We would rather suffer through the tough times than never have known our gorgeous Willow.”

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