Manea brother and sister step out for charity that has helped young Walter
A grateful Manea family are stepping out to help raise money for a charity close to their heart.
Leanne Olney and her brother Carl Allen will be walking One Million Steps in just 90 days to raise money for Cystic Fibrosis Care.
The charity, which provides essential services, equipment and practical help and support to children and adults with the disease, which affects the lungs, has helped Leanne and her four-year-old son Walter.
Leanne, who is married to Charlie, explained the challenge will help "get us of our butts, lose some weight and raise money for this wonderful charity".
It means Carl and Leanne will have to walk 11,111steps each every day to hit their target of one million by April 4, having started on January 4.
Leanne said: "It is going well so far, but some days are quite tough, especially if I've been stuck behind a desk all day - it has meant having to do some marching by the side of the bed to ensure I reach the 11,111steps I need to do each day.
"Cystic Fibrosis Care is a wonderful charity and has really helped us, so this challenge means a lot to us."
The brother/sister team hope to raise at least £200 for the charity by their efforts and have a Justgiving page where people can donate.
Walter, who turned four at the end of December,was diagnosed with Cystic Fibrosis at just 13 days old and his family joined a campaign to make new precision drugs that help those with the disease live more normal lives available on the NHS.
They were thrilled when the life-enhancing drug Orkambi was made free to people with Cystic Fibrosis in October 2019, a drug that Walter is currently taking.
It has really helped Walter, who is currently suffering with covid-19, but the family are hoping that he will not have too long to wait before he can have a so-called "wonder drug".
Leanne said: "Thankfully he is doing OK with Covid. He just seems to be very emotional and having night terrors but it absolutely could be so much worse so I’m grateful that is all."
The "wonder drug" is a triple therapy called Trikafta/Kaftrio drugs, and they were made freely available on the NHS in July 2020 to those aged over 12. They have been described as one of the miracle discoveries in the world of medicine.
The intention is to reduce the age of those able to have the drugs to six and then two, so Leanne and Charlie are hoping Walter won't have too long to wait to get the treatment, however, it is currently still only available to those aged over 12.
When the government announced "out of the blue" it would be available to cystic fibrosis patients on the very day it received its European licence Leanne said: "Trikafta/Kaftrio probably doesn't mean much at all to most people, but for us it means the hope of a relatively normal life for Walter and 90 per cent of all those who have cystic fibrosis. It is a truly miraculous drug and is absolutely life-changing for people like Walter.
"I cannot explain the relief and joy we feel - the current life expectancy for a baby born with cystic fibrosis today is early 40s - I'm 40 now and it broke my heart to think my son may never reach my age. This new drug has changed all that, and we now have hope that he will have a relatively normal life, with a normal life expectancy - it is an incredible feeling. I can tell you there have been many joyous tears shed."