Irish Brothers raise awareness of Ehlers Danlos Syndrome

The Barrett family is determined to raise awareness of Ehlers Danlos Syndrome in Ireland. Their three boys have all been struck with EDS. They were fortunate to see world-renowned EDS expert, Dr. Rodney Grahame. However, medical treatments can cost up to €30,000 for patients from Ireland. They thank all those who have supported efforts to raise funds for treatment.

By John Manning.

Barrett boys“The Barrett family are fighting to raise awareness of the rare genetic condition, which against all the odds, has affected all three of their 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, who live in Drogheda.

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 Ehlers-Danlos 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 it.

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 a course in how to manage the condition 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”.

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