After open heart surgery seven times brave Luton tot wants to spend first Christmas at home

Orla with Tina and John
Orla with Tina and John

A brave Luton girl who has had open heart surgery seven times and can’t speak, is daring to hope Santa will grant her wish of being well enough to have her first ever Christmas at home.

Orla, from Luton, first had open heart surgery at just three weeks old.

Orla, who has a rare heart condition, is supported by staff at Keech Hospice Care, the childrens hospice for Bedfordshire, Hertfordshire and Milton Keynes.

Orla, who has a rare heart condition, is supported by staff at Keech Hospice Care, the childrens hospice for Bedfordshire, Hertfordshire and Milton Keynes.

In the first two years of her life alone, she suffered two cardiac arrests at home with terrified parents Tina and John, both 34, forced to give CPR on their living room floor.

Mum, Tina, said: “Each time we never knew whether Orla would pull through. We were close to losing her, I’ve never been so scared.

“There were times when the doctors didn’t think she’d make it.”

Orla has a genetic condition called Di George Syndrome, caused by a missing part of one of her chromosomes, which was diagnosed during Tina’s pregnancy.

Orla

Orla

The toddler spent almost a year in hospital, with the family never able to return home for more than a few days and every part of their day-to-day lives was dictated by doctors and nurses.

Tina said: “Because of her illness, Orla must have a carer go to nursery with her every day and a nurse to watch over her during the night. We are rarely alone.

“There is someone with us most hours of the day and night, five days a week.

“It’s hard having healthcare professionals in your home. We get so little time just to be a family and to do normal things that other families do without a second thought. Orla is a lovely, cheeky little girl and we’re so proud of her, but it’s devastating to see other children her age and know she’ll never be able to do all the things they can.

“This Christmas, we’re asking Santa to grant us our wish to be home together, the three of us, as a family.”

Orla can’t talk and has a severe breathing condition, which means even a cold can be life-threatening.

“In 2016, Orla had to have a breathing tube fitted into her throat, which she relies on 24 hours a day to keep her alive – but it comes at a price,” said dad, John.

“The tube makes it almost impossible for her to speak but we’re helping her learn sign-language, so she can talk to us. We’re learning festive words and Orla can now can sign over 250 words including ‘Father Christmas’, which is brilliant!

“It’s been a difficult and exhausting time for us as a couple, we’re emotionally drained. But, thanks to the amazing support of our local charity, Keech Hospice Care, the children’s hospice of Bedfordshire, Hertfordshire and Milton Keynes, and the adult hospice for Luton and south Bedfordshire, we’re coping much better.

“Because of Keech Hospice Care, Orla has experienced many of her first special moments this year, including sitting on a pony and going on a fairy hunt, and as a family we’re given the best care and support.

“This year, with the help of Keech Hospice Care, we’re hoping our wish will come true and we’ll get our first proper family Christmas at home.

“Because Orla has been so ill, we’ve never truly celebrated Christmas as a family like everyone else. It’s always in the back of our minds that we’ve got to rush back to hospital in a matter of hours.

“We hope this year our wish comes true. Orla’s so excited about Christmas and Santa. She likes snowmen and playing with tinsel and baubles, and we can’t wait to see her face when she spots all the presents under the tree on Christmas morning.

“Really, though, we’re just so grateful Orla is still with us.

“I know Christmas can be expensive but if you can, please make a donation to Keech Hospice Care and help this brilliant charity to help more children and families like mine.

“Keech Hospice Care is our lifesaver, please help make the difference when it matters the most this Christmas time.”

To donate to Keech Hospice Care this Christmas Text ORLA17 and either £5, £10 or £20 to 70070 or visit www.keech.org.uk/donate