Baby Ellie's heartbreaking story set to help raise vital funds for Dorset's Julia's House

A mum has spoken about how she feared that a photograph of her two children might be the last one taken of them together, in this year's Christmas appeal for Julia's House, the children's hospice charity.

Julia's House provides wrap-around care to the families of children with life-limiting or life-threatening conditions in Dorset and Wiltshire.

Jenna Humphries, from Bromham, explains how quickly life changed for her and her husband Luke and their son Tom.

"Ellie was normally such a sunny-natured, happy girl, always smiling and laughing but her whole mood changed."

"The photo of Ellie and her brother Tom was taken the day before her operation and for a long time we could not look at it because it was too raw and full of emotion."

14 HOURS OF SURGERY

Left for even a few more days, Ellie's tumour would have been inoperable. She was in surgery for 14 hours and suffered a stroke which left her partially sighted and with no movement down her right side.

"She was this tiny bundle with a bandaged head lying in my arms and were told we should just enjoy the time we had left with her," says Jenna. "She had started chemotherapy but there was only a slim chance it would work."

Then, just a week before Christmas, the family received the devastating news that Ellie would require another operation to relieve pressure on her brain, and they risked losing their little girl all over again.

"We had just five hours together as a family on Christmas Day. Ellie came home again on New Year's Eve. She was due to have an injection just before midnight but we couldn't wake her up, she was like a rag doll. While everyone in our village was looking at the fireworks we were looking out for the flashing lights of an ambulance."

HOW JULIA'S HOUSE HELPED

When Julia's House entered the family's lives, Jenna and Luke were finally able to benefit from some desperately needed respite time.

"We were like zombies, just so exhausted trying to cope. The word hospice was mentioned and we were horrified - but that was before we truly understood what Julia's House means to families."

Home care sessions meant that Jenna and Luke could spend quality time with their son Tom, who was just three when his sister was ill.

"They've given us time. We had time taken away from us and they've given us time with Tom. Just doing simple things like cleaning the house and doing the laundry, knowing that Ellie was safe."

Then just before lockdown Ellie caught pneumonia because of her weakened immune system and ended up in hospital, meaning the family had to shield for 12 weeks to keep her safe.

"Ellie's nurses would phone and check everything was OK and help out with picking up prescriptions or food. They were there for whatever was most important for us. Trying to do a job, home school Tom and keep up with all of Ellie's speech and language targets and physio was a real struggle, so when we were able to have care again it was an absolute godsend."

ALL CLEAR

Ellie's treatment finished in September 2019 and she's now a "happy and smiley" three year old who recently started at nursery.

She continues to have brain scans every three months to ensure she is still clear of cancer.

Her next one will be the week before Christmas and Jenna says it's a worrying time.

"Every time we're scared that something will show up," Jenna admits. "We call it 'scanxiety'. We love Christmas, but for us it will always be associated with heartache and being frightened for Ellie's health. It has been an emotionally exhausting journey, a bittersweet cycle of hope and despair, and we are just so thankful Julia's House has been by our side."

GENEROSITY OF PUBLIC

The care and support given to the Humphries family and others like them, is only possible thanks to the generosity of the public. Under normal circumstances Julia's House receives no government funding in Wiltshire, and relies on fundraising, donations and gifts in Wills for the majority of the money needed to run its vital service in the county.

During 2020 the charity was forced to cancel many of its major fundraising events.

Its chain of high street shops including Salisbury's is once again closed for the lockdown period, creating a significant impact on the charity's income in the normally busy run-up to Christmas.

As the restrictions due to COVID-19 continue, Julia's House anticipates another challenging year ahead.

To donate to this year's Julia's House Christmas appeal visit** www.juliashouse.org/Ellie or call the Donations Team on 01202 644220.