independent

Wednesday 1 October 2014

Barret family thank all who supported the cause

John Manning

Published 09/08/2014 | 00:00

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A BALLYBOUGHAL dad has thanked all those who have supported the family's efforts to raise funds for treatment for his three boys who have all been struck with the same rare condition.

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Ian Barrett and his family are fighting to raise awareness of the rare genetic condition, which against all the odds, has affected all three of his sons.

The condition affects fewer than 200 people in the country, but three of those people are the sons of Ian Barrett and his wife, Mary.

Their sons, Brandon (12), Kallum (7) and Keane (11), were all diagnosed with the rare genetic condition called Ehlers-Danlos Syndrome (EDS).

The condition attacks collagen in the body and leaves joints weak and prone to hyper-extension and dislocation and leaves the skin fragile and elastic.

The condition is not normally diagnosed until the sufferer is in adolescence, but the Barrett family recognised the symptoms in their youngest son much earlier than that as they struggled to diagnose issues that emerged in young Kallum's life as a toddler.

Ian Barrett remembered his youngest son's early years, saying: 'When Kallum started walking he was continually falling and as he grew it went on and it was never your typical kind of fall.

'He was always kind of clumsy and he could be standing directly beside you one second and all of a sudden he would be on the floor in a heap as if his legs went straight from under him.'

As Kallum got older his sleep became affected by the mystery condition. There would be muscle spasms and 'seizures' at night, and prior to the diagnosis Ian remembers his young son going through 15 nights in a row with just one hour's sleep each night.

Around Christmas time in 2011, Kallum was tested for epilepsy but that was not the answer and while undergoing other tests at Temple Street Hospital a medic happened to mention the possibility of EhlersDanlos Syndrome.

Neither parent had heard of the condition and when Ian and Mary got back home that day, they took to the internet and researched the condition.

That is when they found a fledgling support group in Ireland for the condition, which advised them to take Kallum to London to Great Ormond Street Hospital.

An initial meeting with Dr Sue Maylard in the UK led the couple to the door of world renowned expert in the condition, Prof Rodney Graham, who not only diagnosed Kallum with the rare condition but suggested there was a high likelihood that both of his brothers had the condition too - that theory was later confirmed.

An intensive two-week programme of therapy and course in how to manage the condition and is available in the UK but is only free to UK citizens and can cost anything up to €30,000 for families from Ireland who want to travel for the course. Currently the HSE refuses to fund the trip.

That is just one of the issues the Barrett family and others affected by the syndrome in Ireland want to highlight as well as simply telling as many people as possible what EDS means and how to deal with it.

In recent weeks, supporters of the family have pitched in to raise funds for treatment for Kallum this autumn.

There has been two major fundraising events this summer, including a special night for the Barrett Boys at the Radisson Hotel in Dublin Airport and a golf classic at The Heritage.

Ian said: 'We raised close to €13,000 for Kallum's treatment which is taking place this September until October and without this help from colleagues, friends and family, this wouldn't have been possible.

He added: 'We can't begin to thank people enough for all their help and effort that went in to both events and that are still trying to help.'

The family still has some way to go to raise the funds needed for the treatment but the good news is that there is still time to help.

Fingal Independent

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