Nigel Holland shares a special bond with his youngest daughter Ellie.
The pair suffers from the same rare degenerative disorder – Charcot-Marie-Tooth disease (CMT). Yet they also share the same spirit – something that has made them international news this week.
The disease, which causes extremities to ‘waste away’, has already meant 50-year-old Nigel uses a wheelchair and has limited use of both his hands.
But, while the degenerative condition slowly saps them of their energy and robs both of the dexterity in their hands and feet, they will not let their affliction rob them of achieving their life goals.
Inspired by her father’s ambitious list of 50 things he wanted to do by the time he turned the big 50, Ellie has produced her own ‘bucket list’ of 11 things she wants to have done by the time she turns 11.
“I’ve never let this thing stop me from realising my dreams…and I wanted Ellie to know that her capabilities are there to be explored.” Mr Holland said as he explained to reporters what motivated his list of 50 challenges to complete in the year before his landmark birthday — and before his mobility prevented him from doing so.
Must-do’s featured on the ambitious list contain a mix of physical challenges – like sky diving, completing a half-marathon and even the latest internet craze ‘zorbing’, as well as personal goals – like losing weight and learning to create a crème brulee.
The list also includes things that most of us would take for granted, a dip in the sea for the first time since Mr Holland was a boy as well as finishing a jumbo jigsaw puzzle.
But of all his challenges thus far, completing a half-marathon in his hometown of Wellingborough, Northants, was the most fulfilling says the wheel chair bound father.
“When I got to the end, I was a physical and emotional wreck, I was crying my eyes out,” Mr Holland, whose amazing adventures have been turned into a moving book entitled The 50 List, said – getting published was the 45th task on his list.
A former youth teacher, now web developer, he has been living with CMT since the age of four. The rare degenerative disease has also claimed his legs, he can no longer walk and more recently his hands.
While the father-of-three only managed to complete 47 of his 50 tasks by his 50th birthday – he still needs to meet John Cleese, catch a big fish and have one of his photographs published in a national newspaper – he is glad that the list has had the desired effect on his young daughter.
Ellie has already learnt to make macaroons and painted her own pottery plate and will be feeding penguins by hand and walking over the O2 in London soon enough. That will leave seven more tasks to be completed before her 11th birthday next month.
But, it is clear that the pair will have gained so much more along their journey then just their completed lists and will hopefully inspire thousands more