A mother will cycle 250 miles to help people with a rare disease that left her son with no immune system.
Jo Herbert, 42, and her godfather, Jim Davey, 71, are planning an epic ride in France in May after her son, Toby, 11, was diagnosed with primary immunodeficiency (PID) four years ago.
Jo, a recruitment agency director from Crawley Down, was inspired to help the charity PID UK after she and Toby met a handful of other families affected by the condition in London last October.
Jo said: “I feel we are responsible to keep this charity up and running.
“It’s a very lonely place for people affected by PID, it’s extremely rare.”
Toby is one of some 5,000 people in the UK who have been diagnosed with the disease.
The charity posts personal stories of families’ experiences of PID on its website.
Jo said: “PID UK is a tiny charity.
“It wasn’t available to us when Toby was diagnosed.
“Keeping it running is very important to us. ”
Toby’s condition means that, among other things, should he develop a cold, he will be unable to fight it off and could be ill for weeks.
Jo said: “Toby’s really proud of the fact we are doing this.
“He’s quite shy about people knowing that he has PID but I really do think he wants to make a difference.”
Jo and Jim will be cheered on by her family during the ride, including her father who used to cycle in France with Jim before he got multiple sclerosis.
Jo is one of four daughters and was the keenest on her father’s hobby as a child.
She said: “My dad had some very good times with my godfather. That’s where he did all his biking and that’s why the ride should be only be done in France.
“The bike ride is something that’s close to my heart and my family.”
Cycling has been in the family for more than a century. Jim’s great uncle, Charlie Davey, cycled for Great Britain at the 1912 Stockholm Olympic Games and finished third in the 1921 and 1922 World’s Road Championships.
Jo and Jim and others will be cycling on stationary bikes to raise funds for PID UK in The Orchards, Haywards Heath on March 22. Toby and Susan Walsh, the director of PID UK, will be there.
Jo praised Nick Brand, owner of Brand Cycles in East Grinstead, who sold her the bike she will use in France at a discount and donates part of his profits to PID UK.