In June 2021, Terry Smith and his daughter, Poppy, then seven but now eight, began an epic adventure to help raise money for the Myalgic Encephalomyelitis charity, Search ME UK. The disease is also called chronic fatigue syndrome (ME/CFS).

They started in Liverpool on the west coast and now kayak 162 miles across the country to Goole on the east coast.

Terry and Poppy started their aquatic adventures over the weekend to give mom, Aimee, time to rest as she struggles with this debilitating disease.

Then Terry had the idea to challenge himself and give their hobby a purpose: to raise awareness and funds for ME Research UK.

The father and daughter duo have raised just over £2,500 so far.

Terry and Poppy follow the Desmond Family Canoe Trail which stretches from the west to east coasts of the UK in an inflatable kayak.

This mission takes them the full length of the Leeds Liverpool Canal and then the River Aire and Calder Navigation.

It takes many weekends as they have broken the trip down into manageable chunks and have done nearly 20 sessions so far.

At times they were joined by family and friends, helping both to motivate themselves and to manage the complicated logistics of the trip.

They crossed rural and urban areas, on aqueducts, under overpasses, in tunnels and even on the highway, and unfortunately had to deal with multiple boat punctures.

ME/CFS is a chronic, long-term fluctuating neurological condition that causes symptoms affecting many body systems.

Sufferers experience debilitating fatigue, widespread pain, neurological problems, hypersensitivity to light and sound, and many other symptoms.

Post-exercise sickness (PEM) is a key feature of the disease, being the inability of the body and brain to recover after expending even small amounts of energy. This means that every activity, no matter how basic, has a disproportionate impact and can worsen symptoms for hours, days or even weeks.

ME/CFS affects around 250,000 people in the UK and around 17 million people worldwide.

Surprisingly, very little medical research is funded, so very little is known about the cause and sufferers end up with ineffective treatment.

Often the condition can be triggered by a viral infection, so with the inevitable dramatic surge triggered by Covid and the long Covid, it is even more important to invest in medical treatment to combat this disease.

Aimee said: “This chronic condition affects every part of my life and is very debilitating.

“Being disabled in this way, I am mostly housebound and unable to do many basic activities.

“Getting sick devastated our family life and continues to have a huge impact on Terry and Poppy who are now caregivers and young caregivers to me.

“They sacrifice a lot, adapt and support me to help reduce my fatigue and pain, which allows me to have a better quality of life.

“It’s a marathon, but they’re having fun, meeting some lovely people along the way, and raising awareness.

“They’ve done 108 miles so far with 54 more to go, wish them luck!”