For any couple, coping with a child who has a life-threatening illness is an emotional and practical nightmare. But how does a single parent manage? Ana da Silva's baby girl, Joysie, was given just two days to live at birth, but has defied her doctors' predictions. For her frightened mother, it took days for the magnitude of her disability to sink in. Starved of oxygen at birth, Joysie has cerebral palsy and is incapable of doing anything for herself. That she can now see, hear, play and laugh is a testament to her mother's refusal to give up on her child.
"After she was born I couldn't understand. I could not believe something had happened to her. I was just waiting for her to smile," she said. For a year she spent night and day in hospital with her daughter, often rushing backwards and forwards on the bus to pick up her then four-year-old son Zion from school and trying to keep him happy during the long hours on the hospital ward.
This year, with Joysie now three, the family spent Christmas at home together for the first time. The corner of their small living room is dominated by a fuschia Christmas tree that puffs out fake snow flakes every few minutes. "It is to get Joysie's attention," explains Ana. "She smiles at it, she likes bright colours and the lights."
Ana admits that the first few months were extremely difficult, particularly without a partner to shoulder the burden. "I had to be strong. It is very easy to get depressed. It is very isolating, just you and your baby. It is scary, the feeling you just can't control it. There is nothing you can do. My sister has said [to me] so many times: 'I couldn't cope. I would kill myself'."
Nurses recognised that Ana was at breaking point and referred her to the Rainbow Trust Children's Charity, which provides support for families of children with a life-threatening or terminal illness. Last year the charity – one of three which Independent readers are helping through our 2011 Christmas Appeal – supported 160 single parent families, in the realisation that life is more difficult for them than for couples who can at least rely on each other.
The day Rainbow Trust family support worker Alison Evans arrived at the hospital, a huge burden was lifted from Ana's shoulders. She could ferry Zion around, and when Joysie eventually left hospital, her car was big enough to fit in the little girl's specially adapted chair and oxygen support. "Before Alison it was very difficult," said Ana. "I was about to explode. Suddenly there was less to worry about. It is so good to speak to somebody who understands what you are going through. It has made all the difference."
The job of a family support worker is to act as a back-up who a frantic parent can call in the middle of the night – and who they can trust with the care of their severely ill child.
Joysie is constantly in and out of hospital. At home she is on 24-hour oxygen as well as drip-fed milk and has to be monitored constantly. Her mother, who has to nurse her through hours of physiotherapy, is determined to see her improve. Her prognosis is fragile but Ana remains optimistic, pointing proudly to the fact that she has already defied all medical expectations.
The best present Ana could have had this year was to spend Christmas at home with her two children. Zion and Joysie were thrilled to be able to open their presents on their own sofa, rather than a hospital bed.
Appeal partners: Who we're supporting
Save the Children
Save the Children works in 120 countries, including the UK. They save children's lives, fight for their rights and help them fulfil their potential. Save the Children's vital work reaches more than 8 million children each year - keeping them alive, getting them into school and protecting them from harm. www.savethechildren.org.uk
The Children's Society
The Children's Society provides vital support to vulnerable children and young people in England, including those who have run away from home. Many have experienced neglect, isolation or abuse, and all they want is a safe and happy home. Their project staff provide essential support to desperate children who have no-one else to turn to.
www.childrenssociety.org.uk
Rainbow Trust Children's Charity
Rainbow Trust Children's Charity provides emotional and practical support for families who have a child with a life threatening or terminal illness. For families living with a child who is going to die, Rainbow Trust is the support they wished they never had to turn to, but struggle to cope without.
www.rainbowtrust.org.uk
At The Independent we believe that these organisations can make a big difference to changing many children's lives.
CLICK HERE TO DONATE NOW.
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