A couple who cut short a family globetrotting adventure after their daughter was diagnosed with a rare genetic disorder are taking on a new challenge to help find a cure.
Natalie and Ben Lingard sold their house in Tetney and set off with their three kids in a campervan four years ago to see the world after deciding ‘Life’s too short’. But they decided their wanderlust would have to wait because their youngest, Bree, now seven, needed specialist medical assessments.
She is one of just 3,500 people worldwide to have been diagnosed with Phelan-McDermid Syndrome, which means her development is severely delayed and may even regress. Natalie, 42, said she has the mental age of an 11-month-old, will require lifelong care, may be prone to seizures and could lose her speech and ability to walk in her teenage years.
Today (Saturday), Natalie and Ben, 40, along with three friends, are taking on the Lakeland Trails Ultra 100k, a 62-mile walk through the Lake District to raise funds and awareness for the Phelan-McDermid Syndrome Foundation UK.
(Image: Donna Clifford/GrimsbyLive)
Natalie said: “Bree was always behind in her development, she was slow to crawl, slow walk and could not speak until she was about three. Even now you cannot have a conversation with her.
“I knew something was not right but they could not figure it out. We tried all sorts but then one day a doctor from Lincoln said: ‘I think we need to test her genetics.’
“That was when it came back that she had Phelan-McDermid Syndrome.”
Natalie, a fundraising and events co-ordinator for St Andrew’s Hospice, and Ben, 40, a health and safety manager, are back living in Tetney, with Bree and their older children, Millie, 11, and nine-year-old Henry.
She home schooled the youngsters and Ben worked remotely while they circumnavigated the globe on an adventure that took them across the UK, Europe, America, Australia, Thailand and home via Dubai.
The decision to pack up and go came after a triple family tragedy as Natalie lost her mum, dad and step-mum to terminal cancer within six weeks of each other, hence her determination to ‘make each day count’.
Despite living a dream nomadic existence, Natalie said the seriousness of Bree’s condition, initially thought to be autism, meant it became increasingly important to have face-to-face consultations.
Natalie said: “We could not get in front of doctors when we went and everything was done on Zoom. It meant it did not matter where we were in the world. We could have these calls and still see the doctors and give them the information they needed.
“It was only when the world started getting back to normal after Covid we could see a doctor, which is why we came back. Zoom would not cut it any more. They wanted to meet Bree and do blood tests.”
The family has now resettled in the area but Natalie said it it took some getting used to after two years on the road.
She said: “It was quite a shock to the system, as you can imagine. We had gone from being in the rat race to living a really carefree life with just the five of us, exploring and living each day to the maximum.
“When we came back we had to go back to work. It was very difficult to get back to ‘normal’ but you do what you have to do for your children.”
Natalie said it is ‘heart-breaking’ not knowing what Bree’s life-expectancy is, hoping that a cure or some treatment can be developed to help lead a normal life, or something very close.
The online fundraiser is for PMSF UK, which supports 400 families in the UK and Ireland who care for people with the rare genetic condition that affects cognitive ability, communication and mobility.
Nat’s Just Giving page has already raised over £300, and on it she explained why the couple and their friends are doing the walk this weekend.
She said: “It’s to keep the hope alive for us and 3,500 other families around the world, that one day we will find our cure.
(Image: Donna Clifford/GrimsbyLive)
“Anyone who knows our Bree knows that she is an absolute delight, she’s happy and loving, 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 we will never give up.”
To support the family click here.