Derian House children's hospice 25th anniversary launch: A lifetime of support
When Leanne Witts first entered Derian House 25 years ago with her brother she never imagined she would continue to need their support for her own children.
The 37-year-old year-old’s first experience of Derian House was borne out of her father’s desperation in caring for her little brother, Aaron, who had been diagnosed with Duchenne Muscular Dystrophy (DMD) just before his fifth birthday in 1993.
The condition left him with very weak muscles and losing the mobility in his arms and legs.Leanne said: “Aaron kept falling over and was taken to Royal Preston Hospital for investigation. He was referred to Broadoaks which is a child development centre in Leyland and we were told he had DMD and his life expectancy was only 16 years.”
Two years after his diagnosis, their mum, who had struggled with Aaron’s condition, left their Clayton Brook home with their younger sister.Unable to cope on his own any more, their dad took Aaron to Derian House, where he accessed care at the hospice on a regular basis. He began working away from home more frequently and at the age of nine, Leanne became Aaron’s primary carer.
She recalled: “Every morning I would get Aaron ready to be collected and taken to a special school before I set off for school. When he returned in the evening I was there to take care of him.”Despite her difficult circumstances, Leanne managed to attain her GCSEs and went on to complete a course in Health and Social Care at Runshaw College.She continued to care for Aaron, who attended Beaumont College in Lancaster until he was 19.
Leanne, who resides in Clayton Brook, added: “Derian House was our only lifeline. Staff at the hospice knew us well and they were always there for us, offering help and advice and intervening if necessary.”When Aaron was 18 he was allocated Direct Payments, which allowed the family to employ a carer who came for six hours every day to help.
Leanne said: “Whilst this was a big step forward, Aaron’s condition required two people to care for him, but only one was assigned. We had different carers coming in at different times on a daily basis and the lack of consistency became a nightmare, so I remained very involved in caring for him.”Still caring for Aaron, Leanne became a mother herself, giving birth to Jake in 1999 and Jasmine in 2000.She added: “The impact on my life was considerable. As Aaron got older, his condition could change dramatically from one hour to the next. “One day while he was at college in Lancaster he suddenly collapsed and turned blue and was transferred to Lancaster Royal Infirmary where he went into a coma. Aaron stabilised, but he became totally bed bound, and he was transferred to Derian House before he went back home.”
Aaron died in 2007 aged 22, but Leanne’s journey with Derian was far from over, as some years later, at the age of 32, she became pregnant again with Charlie, and 12 weeks into her pregnancy her baby was diagnosed with DMD. Three years later, Harry was also diagnosed with the same condition and it became clear that Leanne was the carrier of the gene for DMD.
As a result, the hospice is once again very much a part of Leanne’s life. She uses the specialist baby and toddler group, providing her with a support network and the opportunity to liaise with other mums in a similar situation.
Leanne added: “I feel guilty because there is so little time for either child as DMD has taken its toll on them both. But Derian House has made a massive difference in providing a calming environment with fun activities for the children in what would otherwise be a very stressful situation. My partner - the boys’ dad, Matthew Busby, also provides a lot of support.”
Leanne’s older daughter, Jasmine, now aged 17, is accessing Sibling Support from Derian House which provides her with a wide range of expert help and support as well as an opportunity to mix with other children who understand her situation.
Leanne added: “The impact on the whole family is huge, and we deal with each day as it comes. I know that Derian will continue to be there as our lifeline for the future as it’s always been our lifeline in the past. It’s just what Derian does. It’s the means by which we all survive.”