Mum doesn't want pity for Harry, just for him to lead a normal life (with audio)
As the two four-year-olds chatter away and laugh at the screen, it is hard to believe that Harry is chronically ill, or that in a few years time Annie will have to face a future without her twin brother.
In the words of their mother Alice Hirchfield, Harry has a disease that “kills”. He was born with a condition called Duchenne, a degenerative form of muscular dystrophy that leads to paralysis, breathing problems and early death.
No-one can say exactly how fast Harry's condition will deteriorate but most patients with Duchenne are paralysed from the neck down by the time they are teenagers and rarely live past their twenties.
In just a few short years, Alice knows that her son will probably need a ventilator to help him breathe and a permanent feeding tube into his stomach.
But despite the illness, the 34-year-old remains positive and is cherishing the time she has with Harry.
Although he cannot walk, the little boy is bright, active and alert. He alternates between deftly whizzing around his Spondon home in a child-size wheelchair and shuffling along on his bottom.
Duchenne rarely affects mental development so Harry will attend a mainstream primary school with his sister in September and is expected to learn at the same rate.
Alice said: “Harry is mischievous, full of life and can bum-shuffle around the house and garden for England.
“Although there are challenges ahead, many people with Duchenne live their lives to the full, going to university and doing normal things like spending time with friends.
“I want Harry to go to a normal school because I believe in inclusion and although his life will be shorter than most, I will support him in whatever he wants to do.”
Duchenne is a genetic muscle wasting disease that mostly affects males and causes progressive muscle weakness as the cells break down and die.
Caring for Harry is already a full-time job for Alice, a single mum with four other children including Annie, as he needs daily physiotherapy and constant care.
He also regularly visits Derbyshire Children's Hospital for consultations, physiotherapy and occupational therapy and sees a specialist in Newcastle every three months.
She said: “I function on four hours sleep a night as Harry doesn't sleep well. He wakes up between 4am and 6am and then we have to do about half an hour of physiotherapy.
“It's a necessary evil as it prevents his muscles from contracting and becoming permanently deformed but it hurts him so I hate doing it. I often go into the bathroom afterwards and have a little cry.
“Harry must also spend time every day in a standing frame to exercise his leg muscles, as he can't stand independently, and he wears splints on his legs for six hours every day and at night.”
Alice is a former nurse and is determined to keep Harry at home as his condition worsens, rather than put him into care.
She has been given a disability grant from Derby City Council to build an extension on the back of her home with a special bed for Harry, complete with a hoist to help lift him as he gets heavier, and a fully-adapted bathroom.
As Duchenne progresses, patients also experience breathing and feeding problems as the muscles in their chest and abdomen weaken, so the extension will one day house the breathing and feeding equipment that Harry will need in the future. It is usually breathing or heart problems which eventually cause Duchenne patients to die.
Alice said: “Harry is my son and I am determined that he will stay with me for as long as he wants to.
“My hope is that the equipment will help Harry to live as independently as possible as he grows older, able to do things like go to the toilet himself until he becomes completely paralysed, and with a portable ventilator so he can socialise with his sister.”
She said that Annie coped very well with her brother's disability but she has no idea how to prepare her for what lies ahead.
She said: “Harry's condition is normal to Annie because she has always known him this way and she is already very protective of him.
“Once on holiday another little boy came over and asked us why Harry was in a wheelchair. Annie's reply was to ask him why he was wearing glasses!”
Today, patients with Duchenne and their carers from across the country will take part in a lobby of Parliament organised by national charity Action Duchenne, calling for more Government funding for research into the condition.
Ms Hirchfield was going to attend with Harry but he has been poorly with constipation – another common side effect – so she decided not to go.
She said: “As well as calling for more funding for a cure, I want to raise awareness of the condition.
“Sometimes when Harry and I are out and about people look at us with pity, which I find really frustrating because Harry is still a wonderful little boy and I want him to have as normal a life as possible.
“I want the public to better understand people with disabilities and treat Harry the same as everyone else. He's still a person.”
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