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The cruel illness that means Josh Edwards can’t eat solid food

Josh Edwards and mum Heather Josh Edwards and mum Heather

WHEN one Hampshire family tuck into their Christmas dinner with all the trimmings, one member will only be able to watch longingly.

Josh Edwards, 16, has not eaten for more than two years and doctors doubt he ever will.

Severe inflammatory bowel disease has left Josh – who also has autism – unable to tolerate solid food. He survives on a diet of nutrient-rich milk and, after countless hospital visits and years of failed treatments, the teenager’s weight has dropped to just five stone.

His mum Heather – who is convinced her son’s problems were caused by the triple MMR vaccination he received as a baby – finds Christmas one of the hardest times of all.

“It breaks our hearts, as food is a major part of the celebrations,” she says.

As well as operations to remove his bowel and a growth on his oesophagus, Josh has endured numerous exploratory procedures to try and get to the bottom of his illness. The family have even sought medical advice overseas but feel they are no closer to finding a treatment.

Heather recently discharged Josh from hospital after he became so distressed he physically attacked her – something she now puts down to the high doses of medication he was on.

“Josh was pinching my face and shaking me like a rag doll with frustration. He doesn’t understand what’s happening to him and because he can’t talk he can’t tell me how he’s hurting.”

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Locked in his own silent world, Josh, who attends Great Oaks school in Southampton, shows little emotion and cannot understand the feelings of others. Yet he occasionally walks over to his mum, cups her face in his hands and plants a kiss on her lips.

“I’ve lost my beautiful boy to autism and that’s hard enough without having to cope with the bowel problems as well,” she says.

Last year, Josh became violently ill after snacking on one crisp. Earlier this year he swallowed some baby food but was sick within minutes.

“It’s frustrating and we have felt desperation.

I’ve been through the ‘why me?’ phase but in the end you have to carry on,” said Heather.

“I know all the love in the world is not going to make him better but as his mum it is my job to try, and I cannot and will not give up on him. I don’t believe this is as good as it gets. I will carry on until we find something to help him.”

MMR - For and Against

THE CASE FOR MMR ■ The triple MMR vaccine protects children from measles, mumps and rubella, all of which can have serious or even fatal complications.

■ The World Health Organisation states that MMR is a highly effective vaccine with an outstanding safety record.

■ Because of the MMR vaccine, no child has died from acute measles in the UK since 1992 and we are close to wiping out rubella.

■ Before the vaccine was introduced, mumps was the commonest cause of viral meningitis in children and rubella continued to cause terrible damage to some unborn babies.

■ Children who are not immunised with MMR increase the chance that others will get the diseases.

■ Recent studies do not support a link between autism, inflammatory bowel disease and the MMR vaccine.

THE CASE AGAINST MMR ■ Some studies have suggested a link between autism, inflammatory bowel disease and the MMR vaccine.

■ Asthma and Guillain Barre syndrome – a condition of the nervous system – have been linked with the MMR. However, many experts have rejected these links.

■ As with all vaccines, a minority of children will develop mild symptoms of the diseases they are being immunised against.

■ About one in 1,000 children will develop serious side effects such as convulsions.

Comments(2)

teh says...
10:14am Wed 24 Dec 08

I'm sorry but obviously the hospital haven't tried hard enough, and "I’ve lost my beautiful boy to autism", that is an unfair comment to make, I suffer from Aspergers Syndrome, a VERY mild form of Autism, and I don't seem to struggle. Fair enough, autism has its downsides where he can't understand emotion and feeling, but there are ways to cope with it.

On to the subject of MMR, I had it but I don't stuggle to eat, and I really doubt that it has caused it, along with his autism. My mum thought it had caused it, but once I was diagnosed, it occurred to her that she had it too. Just throwing blame at something that has been hyped up to be potentially a cause for a lot of things. Its just like everything is blamed on Smoking.

The poor guy can have a bit more of a better christmas with a bit more help and effort from the NHS.

My feelings are with the family.

Seonaid says...
11:22am Wed 24 Dec 08

I think it a most unfair to compare the symptoms of asperger’s syndrome to those of a severely affected autistic person. They are worlds apart. My son also has asperger’s syndrome but his condition can be manageable. It’s the degree of severity which makes the difference.

Gut problems have been very well documented in autistic children and my son often vomits – sometimes showing blood – but luckily this doesn’t stop him eating.

I also blame MMR for my son’s present condition, but not the triple vaccine alone. He is adult and received the DPT vaccine when a baby. It is no longer in use in UK - it was stopped in Autumn 2004. It contained a mercury compound - though I doubt very much if British authorities would ever admit this as a reason for it’s removal.

After our son was diagnosed with asperger’s, my husband and I came to realise we also had quite a number of Asperger tendencies – just like your mum did. But we both had the DPT vaccines, and so would your mum I expect. The possibility of severe complications seems to emerge in susceptible people, when you add a triple live virus vaccine to someone with an already ‘compromised’ immune system. MMR vaccine wasn’t introduced till 1988, which means anyone over 20 didn’t receive it in infancy. It is now our firm belief that if we and our son had received MMR in infancy, we would all be autistic.

Recently a paper was release from the US military, which listed autism as an adverse event following DPT vaccination. Needless to say the paper didn’t stay long on the public domain.

There is a lot more going on here than we are allowed to know and it’s people like Heather who are helping bring to light a problem that has been kept hidden for far too long.



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