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Special celebration Terminally ill girl (8) celebrates Christmas and birthday at home after spending 17 weeks in hospital

Daisy McDonald, from Templeogue in Dublin, is in the advanced stages of Rett Syndrome and was treated in Crumlin and St James Hospitals over the last few months.

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Daisy McDonald, from Templeogue in Dublin, is in the advanced stages of Rett Syndrome.

Daisy McDonald, from Templeogue in Dublin, is in the advanced stages of Rett Syndrome.

Daisy McDonald, from Templeogue in Dublin, is in the advanced stages of Rett Syndrome.

A terminally ill girl is celebrating her 8th birthday at home today with a special Christmas/birthday tree having missed out on the holiday festivities after being hospitalised for 17 weeks.

Daisy McDonald, from Templeogue in Dublin, is in the advanced stages of Rett Syndrome and was treated in Crumlin and St James Hospitals over the last few months.

Daisy is non verbal. She does not have the use of her hands or legs, is unable to sit unaided, crawl, stand or walk and is Jejunal fed. She has osteoporosis and scoliosis and has had multiple femur fractures.

She suffers daily seizures along with body spasms that can be excruciatingly painful.

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Daisy suffers daily seizures along with body spasms that can be excruciatingly painful.

Daisy suffers daily seizures along with body spasms that can be excruciatingly painful.

Daisy suffers daily seizures along with body spasms that can be excruciatingly painful.

Her mother, Lynn, says that she and her older daughter Ellie are delighted to finally be able to celebrate with Daisy.

"We have outdoor lights and Santa presents and birthday presents. It will be such an achievement after where we were 12 months ago. Her level of care has increased again but I will continue to take a deep breath and keep pushing on.

We spent Christmas day and New Year's day with the angels in the PICU unit then after 15 nights in ICU we returned to St Ann's Ward where the girls did everything to help and support us. "

Lynn says that family carers need to be vaccinated as a matter of urgency.

"All I wish for Daisy's birthday is that family carers will be vaccinated and treated like the health care providers we are and that the most vulnerable children like Daisy will be given the option of receiving the vaccine. Without Daisy receiving the vaccine our lives won't change.

What a lot people don't understand or even care about is the fact that children like Daisy won't be receiving the vaccination. Therefore as her consultant stated the safety of the most vulnerable under 18 year olds depends on the majority of the population receiving their jab and herd immunity taking place.

Even after Daisy’s nurses and myself are fully vaccinated Daisy is still at risk from us. We can still catch it and pass it on to Daisy and others but the risk will hopefully be lowered.

"Daisy's life stands still until we are out the otherside of this pandemic. The same for myself and Ellie and all the other extra special kids of Ireland.”

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Her mother, Lynn, says that she and her older daughter Ellie are delighted to finally be able to celebrate with Daisy.

Her mother, Lynn, says that she and her older daughter Ellie are delighted to finally be able to celebrate with Daisy.

Her mother, Lynn, says that she and her older daughter Ellie are delighted to finally be able to celebrate with Daisy.

Lynn was unable to source a Horrid Henry puppet for Daisy for her birthday. However, she says that Horan's Transport stepped in and collected the puppet which had been donated by a generous member of the public.

"Daisy's smile is my best Christmas/birthday gift. This warrior once again proved her worth in the world. Shes been through the mill, she has frightened the life out of me and she has experienced so much physically that its hard to believe she could ever smile again. But as always she lights up the room and appreciates the little things so very much.

"We have cried so many tears over the months but never lost sight of the end goal. Its been very tough. Regardless of nursing struggles, non stop cocooning for 12 months and multiple hospital appointments caring for Daisy and supporting Ellie under the same roof sure beats a tiny hospital room no matter how tough things may get now we are home.

"Yes the tree is up.... we are yet to celebrate Christmas so we will have our combined celebrations to make it an extremely special day not only for the birthday girl but for myself and Ellie too."

Lynn has to wake every two hours at night to give Daisy medication and Ellie, who has won a carers award, is balancing homeschooling with nursing her sister.

In January of last year Daisy was disharged from hospital with an anticipated 24 hours to live. However, she has continued to defy the odds and has celebrated another birthday.


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