Independent Appeal: 'I was devastated and close to a breakdown'
Michelle, the mother of a disabled son, was at her wits' end before the Rainbow Trust stepped in
Alice Jolly is an author, playwrite and teaches creative writing at Oxford University. She is crowd-funding her own memoir of infertility and surrogacy with the publisher Unbound. 50 per cent of the proceeds of the book will be donated to SANDS (The Stillbirth and Neonatal Death Foundation).
Saturday 10 December 2011
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When Michelle gave birth to her son William, it was a moment she had been waiting years for.
After nine previous pregnancies – eight of which ended in miscarriage, and one stillbirth – she longed for a child. But then William was born with Dandy-Walker syndrome, an abnormality which places additional pressure on the brain. He was lucky, said doctors, to have survived the birth.
But life was a battle from the start. Six days later, William went into surgery to have two hernias removed from his groin. At five weeks, he had emergency brain surgery. It was at this stage he was given six months to live. "I was devastated, stressed," says Michelle. "Everything you can imagine."
Yet today William is almost two years old. Michelle and her fiancé Tom are looking forward to a double celebration in the coming weeks: Michelle's 27th birthday and William's second Christmas. It is a milestone the family didn't think they'd reach.
For the first eight months of William's life, Michelle and Tom coped unaided. Tom had started a new job in hospitality, so Michelle gave up her teacher-training course to care for their son. As well as the Dandy-Walker syndrome, William also has extremely limited sight and hearing. Due to muscle weakness, he is unable to sit up (unlike most children his age, he can't be put in a car seat or held to Michelle's lap and must be transported in a wheelchair).
The little boy's immune system is lowered to the extent that, if he catches a cold, he will almost certainly need hospital care. He also has sleep apnoea in which the muscles and soft tissues in his throat relax and collapse sufficiently to cause a total blockage of the airway. So William has a machine strapped to his chest which constantly checks that he is still breathing.
The workload for Michelle is extraordinary. She takes William through 45 minutes of physio three times a day. Getting him dressed takes 20 to 30 minutes; having a bath takes an hour.
The family live in Swindon, but their medical care is split between three hospitals. Michelle makes regular journeys to Oxford and Bristol. Until recently, she wasn't awarded a disabled parking sticker by the council – even now, she has only managed to obtain one due to William's eyesight problems, not his mobility issues. She receives no mobility allowance and won't until William is three; the authorities maintain he is no less mobile than other boys his age.
"I was about this close to having a breakdown," says Michelle, holding up her finger and thumb. And then Rainbow Trust stepped in. With an office in Swindon, it has staff spread across the region, offering help to families like William's. Michelle was introduced to Jayne Abbott, a family support worker, and her life changed. "When she first came over, she told me to sit down while she did the dishes. It was the first time that I actually got to play with William."
Since then, Jayne has become part of the family. She drives Michelle to William's hospital appointments, helps juggle her various responsibilities, and stays at the hospital with William to allow Michelle precious time at home.
The emotional support Jayne offers to the family is immeasurable. "It can be something as simple as letting her offload," says Jayne.
Rainbow Trust – which is one of the three charities supported by this year's Independent Christmas Appeal – even organised the family a holiday to a hotel in Torquay which offered them a free, all-inclusive break.
Rainbow Trust family support workers develop close relationships with their families. Only one – or occasionally two – will be allocated to a family. They in turn deal with multiple families; Jayne has 22 to look after. Support workers are on call for families out of hours at times of greatest need.
Rainbow also operates a fortnightly drop-in centre, allowing children to come and play for a few hours. Next week is their Christmas party – biscuit-making, games and a visit from an elf are planned. After the party, William can look forward to a fun-filled Christmas. Michelle will put her feet up while Tom makes Christmas dinner. They plan to stay at home, with family visiting on Boxing Day. William's health makes it difficult to travel: he has to be fed through a tube, which requires transporting hefty equipment. Travel sickness can be a problem too – he has a cleft palette and weak muscle control so vomiting is dangerous.
William enjoys playing with things that make a noise – bashing a drum, ringing bells, and there will be plenty of that: "We've got him a lot of interactive toys," says Michelle. "Instruments, things that blow bubbles. The plan is to give them to him throughout the day, rather than all at once, so he can appreciate it properly."
All being well they won't need Jayne there. But they've got the comfort of knowing she's ready to answer their call.
Charities we are supporting
Save the Children
Save the Children works in 120 countries, including the UK. It saves children's lives, fights 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.
The Children's Society
The Children's Society provides crucial 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. Its project staff provide essential support to desperate children who have nowhere else to turn.
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 would struggle to cope without.
At The Independent, we believe these organisations can make a big difference in many children's lives.
CLICK HERE TO DONATE NOW.
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