I hope my trek will raise awareness of rare illness

11:59am Wednesday 17th February 2010

By James Connell

AN adventurous dad will journey through the frozen Arctic on a dog sled as part of an epic charity trek to raise money for people with the same rare and painful disease which killed his mother.

Jonathan Small, of Upper Street, Defford, near Pershore, will take part in the Husky Trail in Lapland, a gruelling week-long trek from Norway into Sweden.

During the 155-mile (250km) trek in April, he will have to put up his own tent, cook for himself and harness, feed and clean up after the dogs during exhausting 14-hour days as temperatures plunge as low as minus 20C.

Podiatrist Jonathan, a member of Pershore Phoenix Dragon Boat Racing Team and a keen mountain walker and traveller, is already physically fit.

However, after celebrating his 40th birthday, he wanted a challenge to test him mentally and physically more than anything he had done before.

Father-of-one Jonathan also has a more personal reason for deciding on such a tough challenge.

He wants to raise more awareness and thousands of pounds for a charity called the Raynaud’s & Scleroderma Association in memory of his mother Pat Small, who died 15 years ago on February 16, 1995, when scleroderma caused her kidneys to fail.

Jonathan said: “My mum suffered from both Raynaud’s and scleroderma. At the time, very little was known about the conditions. I remember going as a young child with her to see various specialists in the hope of them finding a diagnosis for her debilitating illnesses.

“Early on, she suffered from acutely painful fingers and toes, progressing to hand deformities, but without realising the impact the scleroderma was having on her internal organs. Eventually, her kidneys succumbed to the disease and she was forced to survive on dialysis.”

Kidney transplantation was not an option but a new dialysis technique had been developed which enabled more freedom from hospitals than conventional dialysis techniques.

Pat was one of the first people in the UK to use continual peritoneal ambulatory dialysis (CAPD). This meant a permanent opening in her abdomen, through which she had to carry out 30-minute fluid exchanges, four times a day, 365 days a year. Pat was determined to live as normal a life as possible, despite the obvious restrictions of these exchanges.

She tried to hide her devastating illness from her two sons as much as she could to protect them, but it was not always possible.

Jonathan said: “Many a time, our car would be packed full of CAPD equipment to go out for the day or go on holiday and we would pull up in a layby so she could carry out an exchange. At times it was difficult to keep any privacy doing this – imagine how you’d feel if you had to go to the toilet in full view of everyone for 30 minutes.

“Unfortunately, infection was a frequent problem of having a permanent hole in her abdomen.

“My brother and I would be regularly woken in our teenage years by the sounds of her crying out or, even worse, blue flashing lights outside our house signifying an ambulance taking her into hospital.

“Those times were the hardest for us as we didn’t know if she would survive the night for us to see her again the next day. Her illnesses continued to progress and cause her more suffering.

“However, through her determination, together with the love and care of her family – especially my father and aunt – and the dedication of medical staff, she survived more than 10 years on CAPD. In February 1995, my mum stopped suffering.”

It is fitting that the husky challenge will be completed in some of the coldest and most inhospitable conditions on the planet because a change in temperature is often what triggers an attack of Raynaud’s.

Raynaud’s can be incredibly painful with the blood supply to the extremities being cut off, usually affecting fingers and toes.

During an attack they first become white and dead-looking, then can turn blue and finally red with a burning sensation. There may be considerable pain, numbness or tingling.

Many describe an attack as being similar to having frostbite or having trapped your fingers in a car door. Women are affected more than men and it can have a devastating effect on day-to-day quality of life.

Simple tasks such as opening jars and bottles, peeling vegetables, putting nappies on babies, shopping, writing – things most people take for granted – become difficult. This can make life particularly awkward for mothers of young children and for those living alone.

Scleroderma (for which there is no cure) means hard skin but the hardness is not limited to the skin – the internal organs and their blood supply may become damaged, which can be fatal.

Pat, a former secretary, was involved with this same charity in its fledgling years and now her son wants to promote better communication between doctors and patients, to disseminate information and to raise funds for research and welfare projects.

● Jonathan is seeking support from local businesses and individuals in his fund-raising efforts. He hopes to raise at least £4,000 for the charity and is grateful for any assistance possible. He can be contacted on 07791 166912 or e-mail at FootmanJ@aol.com.

There is a collection tin at Pershore Town Football Club for loose change or notes, and cheques (made payable to The Raynaud’s & Scleroderma Association) can be left there as well, as can any raffle prizes anyone would like to donate.

Alternatively, debit card donations can be made online at justgiving.com/FootmanJ.

And a “winter warmer quiz night” will take place on Friday, February 26, at Pershore Football Club. Food will be served at 7.30pm and the quiz will take place afterwards. Entry is by ticket only with teams of up to eight people.

To buy tickets, call Pershore Football Club, call Jonathan or wife Diane on 01386 750558 or e-mail FootmanJ@aol.com.