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jack and jill Family's joy as bubbly little Bella is winning her battle with rare genetic condition

Brave kid's family appeal for help in annual charity fundraiser as lockdowns hit Jack & Jill Foundation

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Little Bella has brought joy to her family.

Little Bella has brought joy to her family.

Little Bella has brought joy to her family.

The family of a girl with a rare genetic condition have spoken of their joy at the little milestones she continues to reach.

Bella Leen was born with Wolf-Hirschhorn syndrome, a disorder that affects many parts of the body.

In Bella's case, it means she has low muscle tone, is fed through a tube and has epilepsy. Despite the impacts of the condition, the two-and-a-half year old has recently started trying to sit up by herself, to the delight of her family.

"She needs full-time care but in her own little way she is doing great," said mum Aisling Griffin.

"She's able to roll on the floor and she's getting there with sitting up by herself in the last two months, which has been just brilliant. She's started reaching for things as well which she wasn't doing when she was younger so that's great."

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Parents Aisling and James with Bella

Parents Aisling and James with Bella

Parents Aisling and James with Bella

Aisling's sister Roisín also has Wolf-Hirschhorn syndrome so Aisling and her husband James knew of its potential impacts. You can be a carrier of the gene but be unaffected, as was in the case of Aisling. The chromosomal condition can affect different people in different ways.

"She has low muscle tone, intellectual disability, epilepsy," explained Aisling.

"The syndrome is manageable but the epilepsy can be tough."

Despite the many challenges she faces, Bella is a bubbly and cheerful little girl who inspires her family, from Ballyheigue in Co Kerry.

"Bella is amazing. She's full of laughter and chuckles and she loves her grandparents, John P and Norrie and Mary and Billy. They spoil her, they're her favourites."

Aisling and James were given the news that Bella had the condition when she was a couple of weeks old, though it was first raised during her pregnancy.

"They suspected it when I was pregnant as I was having a lot of scans. About two weeks after she was born we got the news that she had it. It was tough. We felt that she had the syndrome but at the same time we were hoping that she didn't.

"Being positive and talking to people as well helps. I see how much joy my sister brings. And Bella cheers everyone up. Though things can be hard she brings us so much joy."

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Dad James at the coast with Bella

Dad James at the coast with Bella

Dad James at the coast with Bella

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Bella needs around-the-clock care and the arrival of Irish charity Jack & Jill into the family's lives proved to be a game changer.

The little girl goes to early intervention in Listowel and it was here Aisling first heard about the charity, which provides nursing care to children in their own home.

"Not having their support would be extremely difficult," she said. They first came into contact with the liaison nurse when Bella started having seizures at two months, so the support and reassurance was invaluable."

The support also means that Aisling can follow her passion of baking cakes to order and working from home. "I've always loved it and the lockdown gives me a chance to look into it.

"It means James and I are able to go out and get the shopping or go for walks together.

"Our nurse Kaylee who comes to the house is brilliant. She's a lovely person and a brilliant nurse and Bella is mad about her. She gets really excited when she sees her come through the door."

Covid has impacted the family's access to early intervention for Bella, as when the schools are closed so too is early intervention.

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Mum Aisling, who has a sister with the condition, with Bella

Mum Aisling, who has a sister with the condition, with Bella

Mum Aisling, who has a sister with the condition, with Bella

But they are delighted at the little milestones their girl continues to reach, and have a simple wish for their daughter: "That she will be happy and hopefully healthy in the future - that's our main wish for her really."

Now the family is backing Jack & Jill's annual art sale, Incognito. In the sale, the identity of the artists behind the postcard-sized artworks is kept secret until the sale closes. Each piece costs €60, and the celebrities and artists taking part this year include The Edge, Bob Geldof, Tommy Tiernan, Robert Ballagh and Maser.

It's a crucial fundraiser for the charity, which like others has struggled with funding during the pandemic.

"Each year, Jack & Jill has to raise over €4 million to continue doing what we do supporting families to look after their sick children at home, where they belong," said CEO Carmel Doyle.

"Less than 20 per cent of our funding comes from Government, and with Covid-19 continuing to restrict the public-facing fundraising that we would normally do, we are relying hugely on the generosity and support of the public for Incognito 2021. Each piece bought from Jack & Jill means four hours of specialist home nursing care for one of our 374 children."

There are more than 1,200 artists taking part in this year's Incognito online art sale of 3,000 pieces of original art.

The sale, in aid of the Jack & Jill Children's Foundation and its in-home nursing care for very sick children, goes live on Thursday, April 22 at 10am at incognito.ie. People are advised to register in advance as it sells out quickly.

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