Parents complete walking marathon to boost hope for daughter, 7, with rare disorder

Ben and Natalie Lingard hit the headlines in 2022 when they sold their house and set off with their three children in a campervan to explore the world after deciding that “life is too short”.

But after two years on the road, they had to return home because their seven-year-old daughter, Bree, became one of only 3,500 people across the world to be diagnosed with Phelan-McDermid Syndrome.

The condition affects the development and functioning of the brain, and results in physical and intellectual disabilities.

Bree has the mental age of an 11-month-old girl, will require lifelong care, may be prone to seizures and could even lose essential skills, such as her speech and ability to walk, in her teenage years.

Ben, 40, and Natalie, 42, have thrown their support behind the Phelan-McDermid Syndrome Foundation (PSMF) UK, a charity that helps affected families and is determined to raise awareness and find a cure for the little-known condition.

And as part of their fundraising drive, the mum and dad took on the Lake District Ultra 100k Challenge, walking 62 miles through some of England’s finest but most challenging countryside.

"It was a tough gig, walking non-stop through the night,” gasped Natalie, who works as a fundraising and event co-ordinator for St Andrew’s Hospice.

"But we did it! It took 26 hours, 57 minutes and it was hard!

"The weather was not on our side. We were cold, wet and broken by the end. But we were incredibly proud of our personal accomplishments."

Natalie and Ben, who is a health and safety manager, were joined on the marathon trek by friends Crag Jackson, Alex Willerton and Penny Moorby.

And through a Just Giving page online, they raised the tremendous total of £2,300 for the charity, courtesy of 94 donations.

"A gigantic thanks to everyone who supported us and sent words of encouragement,” said Natalie. “I can’t tell you how much we needed those messages at points. The link is still live if anyone else would like to donate.

"Thanks also to the Louth-based property maintenance company, G.Fawcett, for sponsoring us, and to Hi-Lite Signs, of Louth, for providing and printing our T-shirts, which looked and felt fantastic.”

One of the reasons the Lingards decided to pack up and tour the world was because of a triple family tragedy when Natalie lost her mum, dad and step-mum to cancer within six weeks of each other.

Now she and Ben face the challenge of caring for Bree – as well as bringing up their other two children, 11-year-old Millie and nine-year-old Henry.

Natalie added: “It is heartbreaking to know that your daughter’s life-expectancy is unknown, and that she will not grow up to be independent and live the full life that we want for our kids.

"We still have hopes and dreams for Bree, but they look very different to those of her siblings.

"We pray that she lives the fullest life but, most of all, we pray for a cure, through the magic of medicine.

"Ben and I did this walk to keep the hope alive for us and the other 3,500 families around the world.

"Anyone who knows our Bree knows that she is an absolute delight. She’s happy and loving, and adores music and being outdoors.

"She is so incredibly special and she deserves to know that her parents and siblings will do anything for her and will never give up.”