Independent Appeal: Someone to lean on during a family's darkest hour

When a child is terminally ill, the parents endure a traumatic and bewildering experience

Emma West and Mark Rowe have faced every parent's nightmare twice over. When their first baby, Megan, was born in July 2007 she was immediately taken to intensive care suffering from a rare chromosome disorder called DiGeorge syndrome. The condition, which causes complex heart problems, meant that Megan spent just a handful of days in her 13-month life out of hospital and at home with her parents.

Then Emma found she was pregnant again.

As Megan underwent three major operations to rebuild her heart, Emma and Mark were rarely away from her bedside at Southampton General Hospital. They were unable to work and lived with the constant fear of their daughter's death. Megan was in pain, hooked up to an oxygen machine and would have "blue episodes" where her breathing would suddenly stop and she'd require resuscitation.

It was during these stressful months that Emma and Mark were introduced to Steve Boss, a family support worker from the Rainbow Trust Children's Charity – one of three charities being supported in the 2011 Independent Christmas Appeal. Steve was there to support the family emotionally and practically as Megan's condition deteriorated and her parents prepared themselves for the worst. Megan went through surgery in a final attempt to save her life, but on 19 August 2008 she died. Steve was with Emma and Mark as their daughter passed away.

"Steve helped us a lot, didn't you mate?" Mark says to him. Sitting on the sofa in the couple's flat, Steve looks very at home. "I hope I did, yes," he replies. During Megan's illness Steve was invaluable as someone the couple could lean on emotionally, for practical help driving them to and from the hospital, and as an additional pair of ears during complicated medical consultations.

"Steve would come in and see the doctor with us. Doctors speak so quickly it's hard to understand sometimes. Medical language can be very confusing. You think you've understood but then leave the room and it's gone. Steve would always help explain afterwards," Mark says. Emma adds: "When Megan was on three kinds of machines for her heart and I had not a clue what they were doing, Steve asked the questions for me."

Steve's support didn't end after Megan's death. In the subsequent years he was around to provide bereavement counselling as they grieved for their daughter, to drive them to her grave and to share memories of her with them. During this painful time Emma suffered two miscarriages before having a successful pregnancy.

But then she and Mark found out at a 20-week prenatal scan that the new baby had the same condition.

Emma has now discovered that she suffers mildly from DiGeorge herself, which means there is a 50/50 chance any child born to her will be affected.

When Lewis was born in July 2010, a day shy of Megan's birthday, doctors found the DiGeorge wasn't nearly as bad as his sister's had been. Nevertheless Lewis had major heart surgery at just eight weeks old and now, aged 17 months, has undergone many operations that have left him, although a happy baby and at home, with some delayed development and still attached to an oxygen machine.

Lewis is a happy little character who gurgles and flaps his arms like any other baby, but his parents are painfully aware of his weak lungs, upcoming surgery and the high risk of infection. Steve is still there to support them.

The Rowes are just one of around 1,170 families across England receiving emotional and practical help from Rainbow Trust. The charity, which receives just 5 per cent of its funding from the Government, currently can only support 10 per cent of the families that desperately need its help.

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.

Life and Style
ebookNow available in paperback
ebooks
ebookA delicious collection of 50 meaty main courses
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
SPONSORED FEATURES

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    The Richmond Fellowship: Executive Director

    £66,192 per annum including car allowance of £5,700): The Richmond Fellowship:...

    Recruitment Genius: Customer Service Advisor

    £16575 - £19000 per annum: Recruitment Genius: An excellent opportunity is ava...

    Recruitment Genius: Office Junior

    £18000 - £20000 per annum: Recruitment Genius: This is a fantastic opportunity...

    Recruitment Genius: Assistant Site Agent

    £22000 - £30000 per annum: Recruitment Genius: This traditional family company...

    Day In a Page

    Isis profits from destruction of antiquities by selling relics to dealers - and then blowing up the buildings they come from to conceal the evidence of looting

    How Isis profits from destruction of antiquities

    Robert Fisk on the terrorist group's manipulation of the market to increase the price of artefacts
    Labour leadership: Andy Burnham urges Jeremy Corbyn voters to think again in last-minute plea

    'If we lose touch we’ll end up with two decades of the Tories'

    In an exclusive interview, Andy Burnham urges Jeremy Corbyn voters to think again in last-minute plea
    Tunisia fears its Arab Spring could be reversed as the new regime becomes as intolerant of dissent as its predecessor

    The Arab Spring reversed

    Tunisian protesters fear that a new law will whitewash corrupt businessmen and officials, but they are finding that the new regime is becoming as intolerant of dissent as its predecessor
    King Arthur: Legendary figure was real and lived most of his life in Strathclyde, academic claims

    Academic claims King Arthur was real - and reveals where he lived

    Dr Andrew Breeze says the legendary figure did exist – but was a general, not a king
    Who is Oliver Bonas and how has he captured middle-class hearts?

    Who is Oliver Bonas?

    It's the first high-street store to pay its staff the living wage, and it saw out the recession in style
    Earth has 'lost more than half its trees' since humans first started cutting them down

    Axe-wielding Man fells half the world’s trees – leaving us just 422 each

    However, the number of trees may be eight times higher than previously thought
    60 years of Scalextric: Model cars are now stuffed with as much tech as real ones

    60 years of Scalextric

    Model cars are now stuffed with as much tech as real ones
    Theme parks continue to draw in thrill-seekers despite the risks - so why are we so addicted?

    Why are we addicted to theme parks?

    Now that Banksy has unveiled his own dystopian version, Christopher Beanland considers the ups and downs of our endless quest for amusement
    Tourism in Iran: The country will soon be opening up again after years of isolation

    Iran is opening up again to tourists

    After years of isolation, Iran is reopening its embassies abroad. Soon, there'll be the chance for the adventurous to holiday there
    10 best PS4 games

    10 best PS4 games

    Can’t wait for the new round of blockbusters due out this autumn? We played through last year’s offering
    Transfer window: Ten things we learnt

    Ten things we learnt from the transfer window

    Record-breaking spending shows FFP restraint no longer applies
    Migrant crisis: UN official Philippe Douste-Blazy reveals the harrowing sights he encountered among refugees arriving on Lampedusa

    ‘Can we really just turn away?’

    Dead bodies, men drowning, women miscarrying – a senior UN figure on the horrors he has witnessed among migrants arriving on Lampedusa, and urges politicians not to underestimate our caring nature
    Nine of Syria and Iraq's 10 world heritage sites are in danger as Isis ravages centuries of history

    Nine of Syria and Iraq's 10 world heritage sites are in danger...

    ... and not just because of Isis vandalism
    Girl on a Plane: An exclusive extract of the novelisation inspired by the 1970 Palestinian fighters hijack

    Girl on a Plane

    An exclusive extract of the novelisation inspired by the 1970 Palestinian fighters hijack
    Why Frederick Forsyth's spying days could spell disaster for today's journalists

    Why Frederick Forsyth's spying days could spell disaster for today's journalists

    The author of 'The Day of the Jackal' has revealed he spied for MI6 while a foreign correspondent