Dad counts his blessings but reveals struggles of bringing up a disabled child ahead of Father’s Day – The Sun
IT is Father’s Day tomorrow – and these dads have very special reasons for counting their blessings.
They all have children who are suffering from complex medical conditions. This month, The Sun launched the Give It Back campaign to urge the Government to plug the missing £434million in services and care for families with disabled children.
Here, three men tell about the struggles their families face and how the extra funding could help transform their lives.
‘Maddison has defied the odds every day’
JAMIE Sherwood, 35, is dad to Maddison, ten, who has a muscle-wasting condition that affects breathing and swallowing. They live in East Leake, Notts, with mum Lidia, 33, and their three other children, Lacey, 17, Harley, 14, and Jayden, 12. Jamie said:
“Maddison has defied the odds every day of her life. At ten months old, she was in intensive care and Lidia and I were told it was best to let her go.
“But as parents we have always said, where there is life, there is hope.
“Maddison was given a tracheostomy to help her breathe, and she couldn’t come home until we had been trained in how to manage her care.
“Our daughter has SMARD – spinal muscular atrophy with respiratory distress – and requires 24-hour-a-day care, so I had to give up work as a builder.
“At night, she is hooked up to a ventilator that pumps oxygen into her lungs. If it falls out, it could be life-threatening, so someone has to watch her as she sleeps. We do have a regular carer, but due to staff shortages there are often weeks when no one can come.
“There are times when I do the night shift four or five times a week.
“I’m not complaining – you do anything for your kids. The knock-on effect, though, is that we have little time to spend with our other children.
“Jayden suffers with anxiety because we were at the hospital so much with Maddison when he was a baby.
“Money is a constant worry. Our electricity bills are through the roof because the ventilator runs all night, plus we have an electric bath, electric bed, suction machines, monitors.
“Maddison is lucky enough to go to mainstream school.
“We didn’t know how other children would react to her ventilator and wheelchair, but it was the best decision because she loves school and has fantastic friends.
“The Sun’s campaign is brilliant. It really highlights what families have to go through when they have a disabled child. We don’t want people to pity Maddison but to just understand how hard it is for families.”
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