Connor Olsen, four, with mum and dad Georgina and Wayne, from Westgate. He was diagnosed with a rare muscular wasting disease Duchenne muscular dystrophy in March 2013 and his family and the Thanet community are rallying to support the Caring For Connor Campaign towards the best possible treatment for him
by Mary Louis
Little Connor Olsen is an active lad who loves cars. He is earnest and chatty with twinkly blue eyes. His favourite pastimes include running and swingball.
He has no idea about the rare muscle wasting disease attacking his body.
Nor has Connor, just four, from Westgate, so far been noticeably affected by his Duchenne Muscular Dystrophy, only diagnosed in March.
He has a tendency to fall down rather too often, tires easily and finds stairs a challenge.
The terrible statistical prognosis is that he will be in a wheelchair by the age of 10 and dead by 20.
This has led his family to throwing their hearts and heads into the Caring For Connor Campaign. They have the ardent support of the Thanet community and in just five months have raised more than £5,000.
The goal is to give Connor the best possible chance through a fighting fund for the latest treatment.
There have been remarkable successes in America for other young boys affected, using trials of advanced and costly cutting edge treatment not available here.
When and if this could be used for Connor is uncertain and would mean travelling to the States. An initial single treatment alone costs £11,000.
His parents Georgina and Wayne, of Linksfield Road, and all his supporters are committed to ensuring that when the time is right for Connor to get such treatment, the money will be there to pay for it.
His out-of-the-blue diagnosis has been extraordinarily devastating for his parents, even more so because both Connor and little brother Kye, six months, were long awaited arrivals following challenging IVF treatment.
At the end of 2012, staff at Piggybank Nursery in Westgate mentioned to Georgina that Connor was having a lot of trouble climbing stairs.
She and Wayne initially thought he was just a little slow developing but an initial check with a health visitor led to referrals to a physiotherapist and paediatrician. In March, a blood test revealed he had DMD, a rarer version of more widely known known muscular dystrophy.
Georgina’s first reaction was to go home and cry. Then she thought about Kye who had a 50/50 chance of having DMD if it was genetic. Fortunately tests have shown he is clear.
She said: “At first it was a case of grieving and trying to get our heads around it. We needed to do something positive and came up with the Caring For Connor Campaign.”
Her parents Maureen and Ivan Gowton and siblings Angela Malone, Christina Crittenden, Tony Gowton, Deirdre Hemphrey and Julia Midgley are all local and formed the group behind the campaign.
Steroids, with their own unpleasant side effects, are the only possible treatment available for Connor here.
He is having physiotherapy and due to start at St Crispin’s Infant School in September.
Georgina and Wayne have specially requested that anyone who is connected with or meets Connor should avoid making him aware of his illness. They want to talk to him when they feel the time is right.
See next week's Thanet Extra for more details of how you can help the campaign for Connor.