Wednesday 18 July 2018

'When I look back I'll know I did everything I could to give her the best life' - Mum's bucket list for seriously ill daughter

Lynn McDonald with her daughter, Daisy (4). Photo: Damien Eagers.
Lynn McDonald with her daughter, Daisy (4). Photo: Damien Eagers.
Kathy Armstrong

Kathy Armstrong

The mum of a seriously ill little girl with a rare degenerative condition has said she is determined to help her tick off her bucket list and fill her life with happy memories.

Daisy McDonald, 4, suffers from a genetic neurological developmental disorder called Retts, she is non-verbal, she requires 24-hour ventilation, she cannot use her hands or sit unaided.

She had her first seizure when she was just three days old and never reached any milestones, medics also suspect that she has a mitochondrial disease.

Her devoted mum Lynn is creating as many happy memories as possible for her daughter.

Some of the highlights for Daisy, who is from Tallaght in Dublin, include Fair City star Ryan O'Shaughnessy singing in her house, the cast of Once performed for her and her friends in the LauraLynn children's hospice and a trip to the zoo.

Lynn told "There's no medication that works as well for Daisy as music and the big goal is to get Glen Hansard to perform for her, she falls asleep when he sings, it's on the list and I'm determined to make it happen.

"A balloon ride is top of the list, but we've come to major difficulties with that one, she wants to be a pirate for the day because she loves pirates and anything else cheeky and messy.

"We're hoping to help her to swim with a dolphin and that's difficult but her consultant has said that we should try and make whatever dreams and wishes of hers to come true."

Smaller things that Lynn wants Daisy to enjoy are a teddy bears picnic with friends, putting her feet in the sea and sitting under the stars.

She has spoken candidly about how important these memories are to her.

Lynn said: "The bucket list has given me a focus, when she was in the hospital we fundraised for a log cabin because space in the house has become such an issue.

"I managed that and I spent night after night decorating it to turn it into something special and when it was finished there was a sadness there but I move onto the next thing.
"The bucket list gives me a way of achieving things for Daisy, whereas if I was to sit back and just hold her day in, day out, I would feel I hadn't tried hard enough.

"It's a way of knowing that in years to come when I look back I'll know I did everything I could to give her the best possible life, in a way the bucket list brings a lot of joy because they're memories that we're making.

Read More: 'I'm on my own as far as the State is concerned' - Mum of little girl who needs 24/7 care on lack of government support

"The days can easily roll into one when you're so busy caring for someone but when you bring something colourful or fun in then at least you'll know you've made a lasting memory.

"A lot of families who attend LauraLynn children's hospice understand the importance of making memories that you can cherish in the future."

Daisy spent 112 days in hospital recently before coming home last  month and since then Lynn has done the majority of the caring for her, with the help of her other daughter Ellie (9).

She said: "Even though we've been given the okay from the HSE that we'd get this help, for the last four weeks that we've been home there's been no help because there are no nurses.

"We've had five nights covered, so it's pretty difficult, she needs lots of intervention during the night but it just means myself and her sister are doing it alone at the moment.

Sisters Ellie and Daisy enjoying their new playhouse
Sisters Ellie and Daisy enjoying their new playhouse

"We love doing it, we're happy to do it and there's nothing we wouldn't do for Daisy and we won't complain but it would be nice if there was someone to help, some days would be an awful lot easier if I had some sleep last night but that's just the way it is at the moment."

She also said how proud she is of the bond between Daisy and Ellie.

She said: "Ellie is a really great kid, she misses out on so much and never complains.

"There's a lot of love between them and it's like there's an unspoken language between them, they just understand each other and it's pretty special to watch.

"I think a lot of the time siblings can be forgotten but I do my best to incorporate her in everything."
Almost 2,000 people have followed Daisy's Days, a Facebook page which monitors her progress and her bucket list.
Lynn said she loves to see how much happiness Daisy spreads to others.

She said: "She's a very brave girl and we're so proud of her, today she woke up in pain and there's only so much medication you can give her but she'll always smile or have a little giggle.

"It's inspiring, before Daisy came into my life I would have complained about so many little things that don't matter but now we appreciate all the little things.

"I think that's why her Facebook page has become special to so many people, it teaches us about what matters.

"Some people go through their whole lives trying to figure out what their purpose it but at just four years old it's clear that Daisy's is to spread a little happiness."

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