A BRADFORD couple have spoken out in the hope of raising awareness about a rare, degenerative condition.

It’s a mission close to the hearts of Tamsyn Tait and Jonathan Lawson after their daughter, Daisy, was diagnosed with the disease.

New mum Tamsyn said the initial euphoria of welcoming their first baby into the world “gave way to a level of awful uncertainty I had never before experienced”.

Daisy spent her first month in the Bradford Royal Infirmary’s intensive care unit whilst doctors tried to get to the bottom of why she wasn’t getting enough oxygen and appeared to be “floppy”. 

They eventually discovered she had Congenital Myotonic Dystrophy, a rare neuromuscular condition. 

It’s a genetic disease which affects around 1 in 2,100 people. 

It affects all the muscles in the body which has implications not just for mobility, but also for a person’s heart, lungs and brain, plus the ability to see and to eat and digest food.

The Low Moor couple spoke of the awful moment following the diagnosis, when they were handed a sheet of information about the condition which said a fifth of children affected would die within their first year.

“Before the doctor could say very much at all, my partner almost immediately asked if this was the case,” said Tamsyn.

“We count our lucky stars that thank goodness, he was able to reassure us and that for Daisy, that would not be the case.”

The adorable tot turned one this week and is a “bundle of energy” and “doing amazingly”.

Tamsyn, 31, said they have seen Daisy go from strength to strength and “surpass all expectations”.

Proud dad Jonathan, 32, said: “Currently Daisy is doing really well, hitting most of her milestones, but as this is a degenerative condition with currently no cure or treatment, we have to be cautiously optimistic. 

“The real hope is the current clinical trials that are ongoing.”

He said “there is hope” and added: “We are just enjoying every second with her.”

One of the reasons the couple want to raise awareness about the condition is because of how difficult it was to find information - and other people in a similar situation - and that much of the information was very negative. 

Tamsyn has since discovered she carries the gene along with her dad, half-brother and potentially her grandfather. Jonathan is now embarking on a gruelling challenge - to run eight half marathons in eight consecutive days. 

He begins with the Leeds Half Marathon today and will end with the Great North Run next Sunday.

The total challenge will amount to more than 100 miles and will raise money for Cure DM, a charity which the family said has offered “a little light at the end of the tunnel” on their journey.

It is the only UK registered charity to exclusively support families affected by Congenital Myotonic Dystrophy.

On September 15, City Hall, Forster Arches and Margaret McMillan Tower will be illuminated green for Myotonic Dystrophy Awareness Day.

To make a donation in support of Jonathan’s challenge and for more information about the charity and its work, visit www.justgiving.com/fundraising/jonathan-lawson1