A COUPLE with five children have spoken frankly about how Julia’s House saved their marriage as a new report calls for an urgent review into respite for parents at breaking point.

Lisa and Jason Johnston, whose youngest child Kitty has the very rare genetic disorder Kabuki Syndrome, have shared their story as new research has revealed access to regular short break hospice care for parents of life-limited children could save relationships.

A four-year national study carried out by Bournemouth University in partnership with Julia’s House found 75 per cent of couples who suffered a relationship breakdown had no access to frequent respite care at the time. Yet 64 per cent of divorced or separated parents cited the strain of caring round-the-clock for their life-limited child as either the main or contributory factor in their relationship breakdown.

Lisa, said: “I can honestly say our marriage would not have survived without Julia’s House. Noone can imagine just how stressful and exhausting it is looking after a sick child. Caring for Kitty completely took over our lives. For the first four years of her life, our life was virtually put on hold because she needed so support.”

Kitty’s condition affects her muscle tone and mobility and she also suffers repeated infections and kidney problems which need emergency hospital treatment.

Kitty, eight, was referred to Julia’s House at nine months old for weekly care sessions but Lisa was left feeling resentful that she was staying at home caring for the children while Jason went to work.

“He would leave home at 5am and arrive back at 8pm, I hardly ever saw him. When we were finally together, at the end of a long day, we would often bicker and row.

“As well as resenting his time away at work, I felt guilty and a failure because I was so shattered I wasn’t really doing anything for Jason. He was at the bottom of a very long priority list that started with Kitty and was followed by four other children.”

Kitty had nine operations in the first two years of her life and is rushed to hospital, at times several times a week.

Lisa explained: “The strain and worry were unbearable. I remember sitting on her hospital bed one time when Kitty was about three years old and telling Jason I just couldn’t carry on alone.

“Our relationship reached crisis point when Jason came home one evening and told me he was only still with me for the sake of the children. It was a massive wake-up call. I just didn’t have time to focus on our marriage and relationship and as a result we were pretty much leading separate lives. He was the breadwinner and I was the carer.

“I felt like my life was crashing in on me. We were so close to the edge at that point that if Julia’s House hadn’t stepped in we would have no marriage and our family would be split apart.”

Lisa arranged to meet Kitty’s nurse Alex for a coffee where the pair chatted for two and a half hours.

"Within a week Alex had organised an extra emergency package of care for Kitty to enable me and Jason to go out of the house, somewhere neutral where we could talk and – more importantly – actually listen to each other, away from a house full of children and the constant bleep of Kitty’s feeding machine.

“It took time to rebuild our relationship. We still go out once a week to talk away from home and catch up with each other. Looking after Kitty is important, but looking after ‘us’ is important too. Our marriage is stronger than ever now.

“When your child is ill you can’t just get a babysitter in, you need experienced help. If you can’t call on friends and family you need that support to come from elsewhere – and for us it was Julia’s House. Having that help saved us.”

The report is calling for an urgent review of short break hospice care by the Government as a preventative measure to reduce parental break-up and the economic fall-out from family disintegration.

Julia’s House CEO Martin Edwards was in Westminster yesterday for a reception to launch the study with national charity Together for Short Lives.