Alexandra’s family to lobby for local children’s cancer services

Alexandra, affectionately known as ‘YaYa,’ passed away in January last year just weeks after her 16th birthday.

She had battled the rare cancer Ewing’s Sarcoma for five years and won the hearts of thousands of people at home and abroad as she documented her journey on social media.

In the months following their daughter’s death Andre and Karen Johnston opened a social enterprise cafe ‘YaYa’s Shack’ in the Gasyard.

On the first anniversary of Alexandra’s death, they officially launched ‘Keep Swimming YaYa Childhood Cancer Support Group’.

The group currently hold weekly trauma impact therapy for young people with cancer, who have survived cancer or have lost someone to cancer.

There is also a weekly men’s only social cafe for fathers of children who are living with or have died as a result of cancer.

Andre told the ‘Journal’ both groups are having a really positive impact.

“These groups are also helping us because we are able to give something back. We had cancer in our lives for five years and it was a horrible five years. Everyone’s journey is different and we can relate to what people are going through.

“It is a lot easier for them to chat to someone who has been through it and it allows them to be more honest.”

Andre said the sense of loss for his family ‘is not getting any easier’.

“For the first year after Alexandra died we were numb. This year somehow it feels more real. I found Father’s Day particularly rough this year.

“We just have to accept that we are going to have down days because we are going to have to live this and get through it for the rest of our lives.”

Karen said they talk about Alexandra, whose picture is a focal point in the cafe, ‘every single day’.

The family revealed that in the future their charity intend to lobby for some childhood cancer tests and treatment to be available locally, including paediatric palliative care.

“There were times during Alexandra’s illness when we had to travel all the way to Belfast for a blood test. Other families have to go for scans or MRIs which could be done locally and shared with the specialists in Belfast,” Andre said.

“It is an awful burden for families and there are so many having to travel from the North West.”

This weekend the family will host a fundraising event for their charity and know that it is something their daughter would have loved.

“She would have been right in the middle of it all, even though she shouldn’t have been doing it!” Karen said.

Teams of four are needed to take part to take on the challenge on one of 15 mini trampolines. Registration is £10 and includes a T-shirt, bottled water and a token for food.

There will be a barbecue, bouncy castles, entertainment and a petting zoo for all the family.

The event takes place in the Gasyard between 12noon and 3pm on Sunday, July 21. To register contact YaYa’s Shack or visit www.facebook.com/YayasShackCoffeeShop