A GATESHEAD man has embarked on a massive fund-raising initiative, in the hope of helping find a cure for his young son’s rare and life-threatening genetic disorder.
Two-year-old Alfred Peebles of Lobley Hill was diagnosed just over a year ago with Vascular Ehlers-Danlos Syndrome (vEDS), a condition which causes fragile blood vessels and organs, which can lead to major health problems including ruptures, dissections and aneurysms.
His family were alerted to a health problem when Alfred started to develop unexplained bruising, which also put his already-concerned parents under further pressure as health experts believed they may have been causing the injuries.
Alfred’s dad, Connor, knew that other members of his family had previously been diagnosed with vEDS – including his mum and an aunt who had died from the condition.
This led to Connor being diagnosed, resulting in the devastating news that he had inherited the syndrome.
His attention immediately shifted to Alfred, where Connor decided to get Alfred tested and received a further blow, that his young son also had the condition.
“It was news that no parent wants to hear,” said 29-year-old Connor.
“The condition weakens the connective tissues that hold the body together — particularly in the arteries and hollow organs, ” said Connor.
“ For Alfred, this means that even the smallest bump or injury could be life-changing. There is no cure, and there are no easy answers — just the constant, overwhelming uncertainty of what each day may bring.”
A keen sportsman and boxer, Connor was warned by medical professionals that he must stop all activities immediately where he could get hurt or bruised, along with being told that he shouldn’t lift anything heavy.
“What they told me was I shouldn’t lift more than 10 kilos, which meant they were saying I couldn’t even pick my children up,” said Connor, who also had three-year-old Arthur, who thankfully does not have the condition.
Not wanting to give up all of his physical activity. Connor joined Newcastle’s SCULPT Fitness at Whitehouse Road, where he was able to have a regime created for him that didn’t compromise his health.
And when he told the members about Alfred, they immediately rallied to create a fundraising event, which is taking place on 17 April.
Afrida 4 Alfred will see teams of six people using bikes at the gym to travel 8,000,000 metres – the distance from the most northerly to the most southerly tip of Africa.
Already more than 40 people have signed up to take part, but Connor is now hoping to encourage other people to get involved and to help raise money for the charity, Annabel’s Challenge, which raises funds to both help families dealing with vascular EDS and to support research.
“There are only around 700 people in the whole of the UK with vEDS, and at present the average life expectancy is 51,” said Connor.
“I want to do as much as I can. I have already raised £11k, and I’m hoping that with the bike ride we can get this number to £20k.
“I am going to do whatever I can to help fund research because I want to one day be able to say that Alfred “had vEDS” and not that he has it.”
Anyone who would like to participate in the bike ride can contact Connor at connorpeebles@hotmail.co.uk.