‘If I ruled the world, every day would be the first day of spring’. There would be no war, no famine, no greed, no mindless gossip, no Duchenne Muscular Dystrophy.
It is now six years since our lives were turned upside down with the heartbreaking diagnosis of Declans DMD. While professionals advised us of what was to come, the reality didn’t really sink in. How could this little boy be heading towards such a cruel and devastating future. There was no way back, we had to face up to, and accept the inevitable. Time would not stand still for us while a cure was found.
DMD is primarily a genetic disorder passed on to boys by their mother. I am now campaigning to raise more awareness, and support the online petition for more government funding into research. The more I become involved, the more I am learning.
Declans mum is not a carrier. In other words, Declan is an unlucky boy who was born with DMD. This is called a mutation, and I have found out that approximately 30 per cent of sufferers are born to mothers who are not carriers. That is a large percentage, which I find very worrying. When Declan was diagnosed, we were told that it only effected boys and that girls were carriers. Sadly, there are a number of girls who have developed the disease. DMD was first recognised in 1834.
Research has been going on for many years. I have been assured that researchers are ‘at the moment looking into something that will treat all with DMD and could be on the market within 12 to 24 months’ Unfortunately, that will be too late for some boys and girls. Time is of the essence. We need to put more pressure on the government and raise the money to enable the researchers to speed up the process. Declan is now nearly 14.
He has amazed us all by his inner strength and ability to stay calm while facing such unknown territory. He would put us all to shame. I am so proud of him and his mum. The last six years have been such a roller coaster ride. While Ali has tried to cram a lifetime of experiences into Declans life, she has fought one battle after another putting her own health at risk. While society believes that everything is handed to them on a plate, we have found it is not true. Unfortunately, money plays a big part in what sort of life Declan is allowed to have. You either put up and shut up, or you fight for your rights. If our borough council had had their way, Declan would be living in a damp, two up, two down, hardly big enough to swing a cat in. I was told that they would put a toilet in the corner of the bedroom as the bathroom was downstairs beyond the galley style kitchen. How he was expected to get his wheelchair through the kitchen to have a bath was beyond me. Thankfully, their bully tactics didn’t work.
I have promised Declan that I will campaign on his behalf till the day I die. No child should have to live with the fear of dying. It is heartbreaking and very frustrating to read of projects that the government pumps tax payers money into when so many innocent children are left to suffer and die.
Having served the community of Syston and surrounding areas in the post office for the best part of 27 years, I am now asking you all to support me by signing the online petition for more government research into DMD. These children need all our support. The petition can be found at http://epetitions.direct.gov.uk/petitions/14427
Once again, I would like to thank everyone who has supported us and donated to Declans trust fund over the last six years. Your help has been most appreciated. We are currently raising more money to pay for an extension to provide a downstairs bedroom for Declan. Although the house was built with Declan in mind, there was no provision made for paramedics to carry him downstairs in an emergency. As time goes on, it will be necessary to get Declan to hospital as swiftly as possible. Both the fire service and paramedics have shown concern as they feel there is a health and safety issue. Sadly, the housing association aren’t prepared to spend any more money. The location of the house is ideal for Declan, and as this was the fifth move since diagnosis, we feel it would be wrong to have to move again.