Losing her two daughters made Jane McKenna aware of Ireland's need for a children's hospice, writes Kathryn Holmquist

Jane McKenna and her husband, Brendan, have had to deal with a nightmare that no parent even wants to contemplate, much less experience. In August 1999, their four-year-old daughter, Laura, had surgery for a congenital heart condition.

While Laura was in the operating theatre, her parents received the news that their 13-year-old daughter, Lynn, had leukaemia. Within hours, Laura was dead as a result of the surgery. Two years after that, in April 2001, Lynn also died.

"Lynn taught us how to die, but she also taught us how to live," says Jane McKenna (49), who now has no children left alive.

In an attempt to make some sense of the almost unbelievable tragedy, McKenna is trying to set up the country's first children's hospice in Dublin. Currently, there is no hospice for children where they can die in privacy with their families around them.

"Life is not worth living. Not a day goes by that I don't cry for them," says McKenna. "It is a living nightmare and we just struggle on. If I could do something for other families in this situation, it would be wonderful."

In tonight's RTÉ documentary series, Our Lady's (RTÉ1, 10 p.m.), clinical nurse manager Fionnuala O'Neill states that children die with no privacy in "dingy" rooms.

"At times I am ashamed of it," O'Neill says of her ward, which she thinks should be "levelled".

Lynn McKenna died at home because she didn't want to die "in the awful rooms where she had the treatment for leukaemia". There is a desperate need for a peaceful, private "home from home" for families to spend their final days with their children, her mother believes.

When children die at Our Lady's, their parents put their bodies in the back of their cars and bring them home. Some lay them in their beds, or on the living-room sofa, and just hold them for hours on end. When a child's body is removed, the other children on the ward line up and say a final goodbye. It would be difficult for them not to wonder whether it will soon be their own bodies that are gently carried out by grieving parents.

Lynn struggled with leukaemia for nearly two years. Home videos show her smiling and laughing, and doing Spice Girls routines. She was 15 years old when her consultant, Dr Aengus O'Marcaigh, told her straight out that there was nothing more that medicine could do for her and that she was going to die.

Lynn had two questions: "how will I die?" and "how long have I got?" She cried at first, but quickly found a state of grace and acceptance that filled her final three weeks with laughter and inspired those around her.

She believed she would be joining her sister in heaven, and asked to be buried with Laura in a grave at a Church of Ireland cemetery in Castleknock, Dublin. As she planned her own funeral, Lynn made a list of objects that she wanted beside her in her coffin. A torch to light her way, her favourite books, her cuddlies and so many other things that her mother joked: "That's enough, there won't be any room for you!"

Jane McKenna's discovery (on the same day her younger daughter died) that Lynn had leukaemia was so traumatic that Laura's funeral passed in a haze.

"We had no time to grieve, because we were so worried about Lynn," McKenna says. "I don't remember anything about Laura's funeral."

When Laura was disinterred, so that the two sisters could be buried together, the family finally had a chance to mourn Laura also.

"Lynn adored her younger sister," says McKenna. "She had always wanted a sister and waited so long for her to arrive. When Laura died, I think that there was a part of Lynn that wanted to go to be with her."

Before Lynn died, her mother asked her to give her certain little signs from the afterlife. And ever since Lynn's death, these signs have continued to appear.

That Jane and her daughter could communicate so honestly and even laugh during their final three weeks together is revealing of those human qualities that defy ordinary explanation. They were determined to celebrate life.

In her last three weeks, Lynn was brought to Manchester by the Make A Wish Foundation to attend a Westlife concert, after which she spent time with the band in their dressing room. Ronan Keating telephoned her and she got a beautiful card from the President, Mrs McAleese. "These were wonderful experiences that Lynn would never have had otherwise," says her mother.

The family were also treated to a week at Dromoland Castle, where they were able to spend time together as they waited for the end. Jane has a photograph of Lynn sitting on a bench enjoying the view, her face pensive.

"What are you thinking?" McKenna still asks her daughter every time she looks at the picture. She continues to get through one day after another, because Lynn told her to "please go on with your life, Mum" and "don't worry about me".

Our Lady's is on RTÉ1 at 10 p.m. tonight. To make a donation to Jane McKenna's hospice project, write to Fund for the Children's Hospice, 13 Millstead, Blanchardstown, Dublin 15