‘Being involved in the Night Run gives me strength to keep Poppy Mae’s memory alive’

Little Poppy Mae was diagnosed with Cystic Fibrosis just days after she was born in February.

Her parents, Vanessa and Billy Jones, of Buttercup Way, Warton, were shocked at the diagnosis but hoped their little girl could go on to live a normal life.

However, the couple, who have eight children between them, were left heartbroken when Poppy Mae lost her battle for life on April 28, after being found unconscious.

Now telesales worker Vanessa, 39, and joiner Billy, 48, are taking part in the inaugural Blackpool Night Run on Wednesday in support of Brian House children’s hospice, where staff did so much to help the traumatised family in the last days days of Poppy Mae’s life.

Vanessa said: “After having such a normal pregnancy, it was such a shock to discover that Poppy Mae had Cystic Fibrosis.

“Although we know the disorder is manageable, we just wanted Poppy Mae to have a ‘normal’ and straightforward life – just like our other children.

“We just wanted to shower her with love and give her the best chance in life as possible.”

Unfortunately, just 10 weeks later, on Vanessa and her husband’s wedding anniversary, Poppy Mae was found unconscious and rushed to hospital.

After a harrowing transfer to Alder Hey Children’s Hospital from Blackpool Victoria Hospital, doctors gave the couple the devastating news there was nothing more they could do for her.

Vanessa and her family had to come with terms with the fact that it was time to say goodbye to their precious daughter.

It was while the family were at Blackpool Victoria Hospital, that they learned of the Butterfly Suite at Brian House Children’s Hospice - a place where Poppy Mae could stay while her family took as much time as they needed to say goodbye and make funeral arrangements.

The Butterfly Suite is an alternative to a chapel of rest, and is available at Brian House for any child who needs it on the Fylde coast. For Vanessa and Billy, it meant that friends and family who hadn’t been able to meet Poppy Mae were able to say hello, and their final goodbyes.

Vanessa said: “The Butterfly Suite allowed us to spend that precious time with Poppy Mae, instead of worrying over the alternative options that wouldn’t have provided us with that opportunity.

“One of the staff members, Sue, helped me to explain what had happened to Poppy Mae to my other children, which was a big relief.

“We also decided to have a Memory Leaf dedicated to Poppy Mae, so that her time at Brian House will always be remembered – it’s a comfort to know her name is there with the other children.”

Vanessa and Billy are not the only members of the family to sign up to the Blackpool Night Run in memory of Poppy Mae.

Also taking part are Vanessa’s older son Kyle 16 and a pal, as well as Bill’s older children Stacey, 29, Holly, 24 and Lucy, 23.

The couple’s two younger children are William, six, and Beaux, four, while Vanessa’s other older son is Jack, 14 and Billy’s other son is Rick, 30.

Vanessa said: “I wanted to take part in the Night Run as I’ve never done anything like this before and I want to remember Poppy Mae through the events that Brian House runs.

“Although I’m not sure I’ll be able to run the whole way, just being involved gives me the strength to keep her memory alive.

“The hospice provides amazing care for whoever walks through the door and the staff are just incredible.”

The Night Run also gives attendees the chance to have a sneak peek at the Illuminations before the official switch on.

The free event is currently at capacity, but people can keep an eye out on Brian House’s social media pages for any last minute places.

If you’ve entered and have any questions about Night Run, contact the fundraising department on (01253) 359362.

Search on Just Giving to find Vanessa’s fundraising page.

What is Cystic fibrosis?

Cystic fibrosis is a genetic condition that affects around 10,800 people in the UK - around one in every 2,500 babies born.All newborns are screened shortly after birth using the heel-prick test that all babies in the UK receive,The Cystic Fibrosis Trust said it is misleading’ to suggest there is an average life expectance, because the condition can affect people differently.The gene affected by CF controls the movement of salt and water in and out of cells. People with cystic fibrosis experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.

Breakthrough

Blackpool is at the forefront of the fight against cystic fibrosis as a new breakthrough has sparked hope of finding a cure.Dr Aristides Tagalakis, associate professor in human biology at Edge Hill University, has helped develop pioneering gene therapy to halt the condition’s debilitating effects.Now his team will be working with Blackpool Adult Cystic Fibrosis Service to develop the treatment in the hope of finding a full cure.Currently it can “silence” mutated genes responsible for producing thick mucus in the lungs of sufferers - but it is hoped one day to be able to permanently correct the faulty genes.Dr Tarek Saba, consultant respiratory physician and director of the Blackpool Adult Cystic Fibrosis Service at Blackpool Teaching Hospitals NHS Foundation Trust, said: “This is a very exciting line of research and we’re looking forward to working with Dr Aristides Tagalakis and his team at Edgehill University. It has the potential to revolutionise the treatment of adults and children with Cystic Fibrosis.”Dr Tagalakis said the treatment could “drastically” change people’s lives.He added: “Ultimately the aim of my Nanobiotechnology and Translational Medicine Group, in conjunction with Blackpool Adult Cystic Fibrosis Service, is to use gene editing not just to silence but to permanently correct mutated genes responsible for the condition.”