When Jenny Hannigan steps into her wedding dress for the second time, there will be someone very much in her mind.

Jenny and a group of pals will don their gowns next month for a wedding dress ball they are organising to raise funds for two charities close to their hearts – the Manorlands hospice in Oxenhope, where one of the women’s mothers was cared for, and The Jennifer Trust, which helped Jenny and her family following the devastating death of her son Lucas.

Lucas was only four months old when he died from the rare condition Spinal Muscular Atrophy, an inherited neuromuscular condition affecting nerve cells in the spinal cord. SMA is a relatively rare disease affecting around one in 6,500 babies.

Lucas was Jenny and her husband Stephen’s second son. Their eldest, James, was two and a half when Lucas arrived on August 4, 2008.

“I remember looking at him thinking ‘he is so beautiful, we are so lucky’, particularly having our first son, James, and being besotted by him,” recalls Jenny.

She recalls noticing that Lucas appeared to be weak, but he had been born a week early. He’d passed all his health checks and there wasn’t any concern.

The first sign something was wrong came at Lucas’ eight-week check when the GP raised concerns that the baby was thriving, but weak.

“As I watched them doing the tests, I noticed he didn’t startle,” says Jenny.

Jenny, a web designer, turned to the internet to research her son’s condition. “The more I read, it seemed to be something serious,” she says. “That’s when it first hit me that Lucas was very ill.”

The family, from Cullingworth, went to see a private consultant, hoping their son was strengthening.

They discovered The Jennifer Trust while scouring the internet for answers. Reading about the experiences of parents whose children had the condition, Jenny and Stephen noticed similiarities with Lucas’s symptoms.

At that stage, though, medical experts were still carrying out tests which would reveal what they were dealing with.

The couple initially dismissed the idea it could be anything genetic. One in 40 people are carriers of SMA and Jenny and Stephen discovered, although they had James and have since had daughter Jasmine – born on August 3, 2010, the date after Lucas’ birthday – that they are both carriers of the condition.

For a while they clung to the hope that it would be something that could be treated.

When the diagnosis came, it was a devastating blow and, knowing their time with their baby boy would be short, the couple planned to make it as special as possible.

With support from the Jennifer Trust, which allocated an outreach worker, Claire, the family were able to enjoy precious time together. Sadly though, the trips they planned never came to fruition, as four months after their little boy arrived in the world, he died, on December 8, 2008 – six days after his brother James’s third birthday.

“It was a difficult time for us as a family, but when Lucas had been diagnosed we were able to plan. We knew he had two months and we wanted to make it the best we could for him, and we did,” says Jenny.

The couple were also conscious of how it would affect James. Claire put the family in touch with another family who had gone through a similar experience.

“It was such a comfort to me to hear how they had coped and were still coping almost ten years after the death of their baby,” says Jenny.

She says James was an “amazing brother”. He and Lucas were christened on the same day.

When Lucas fell ill, he spent a week in Airedale Hospital, where he received most of his care, before moving to Martin House Hospice, near Wetherby “We were given the space to be a family, but in a really healing environment. It is just the most incredible place. You would expect it to be a really sad place, but it isn’t, and it is full of the happiest, kindest people,” says Jenny.

She says when Lucas died the couple felt they were in a bubble.

Being so close to Christmas, when everyone is in good spirits, the family found it difficult grieving while trying to keep things as normal as they could.

They put up their Christmas tree with a special decoration for Lucas, which they’d been given at Martin House.

Jenny says James kept them all together throughout the funeral, holding a balloon for Lucas which he let go at the woodland burial site.

“I will never forget James standing there, so small on the icy grass shouting ‘Catch it, Lucas’ with such excitement, as the silver star floated up to the heavens,” says Jenny.

“Nor will I forget how he turned round and waved ‘Bye Bye, Lucas’ as we left the graveside. James is still keeping us together now.”

Lucas touched many lives, including those of two little girls, who have benefited from his heart valves. “We made the decision to donate his heart valves after he died. We had two lovely letters saying two little girls are living on,” says Jenny.

The family cannot thank their supporters enough, including the medical staff who helped with Lucas’s care, the staff at Martin House Hospice, and the Jennifer Trust, which they are now fundraising for.

On the first anniversary of Lucas’s death, Jenny’s brother cycled across Vietnam, raising £10,000 for the Jennifer Trust, and Stephen has also participated in a cycle ride for the charity.

The latest fundraiser – a wedding dress Valentine’s ball at Bradford’s Midland Hotel – was instigated by Jenny’s pal Nicky, a massage therapist, who she became friends with while pregnant with Lucas.

Stephen, bass player with local band Isotones, will perform at the event on February 18.

“We’d like to do something every year, but this time it’s doing something which doesn’t involve anybody cycling across Vietnam or running a marathon,” says Jenny.

“Lucas is still a big part of my life and my day. A day doesn’t go by when I don’t think of him. He taught me a lot – he gave me a lot of things, the strength to get over any triviality that comes along and he gave me courage.

“I started working for myself, I work for myself because I get to look after the children and do my job.”

  • Tickets for the wedding dress ball are £40. For more information, call 07870 596 988 or visit charityweddingdressball.co.uk. To find out more about The Jennifer Trust, call 0800 975 3100 Monday to Friday, 9am until 4.30pm or visit jtsma.org.uk.