The mothers of two young adults affected by a rare genetic disorder met the Minister for Health Simon Harris recently at the launch of Ireland’s first European Exchange Summer camp for young people with Williams Syndrome.
Local Doughiska mother and son, Nuala and Alan Keady, and Ballinasloe mother and daughter, Ann and Karen Breen attended the launch.
It was organised by the Williams Syndrome Association of Ireland (which was set up by Ms Breen in 1987 ) and Trisha Wilkinson from Léargas, the national agency, which co-ordinates funding from the Erasmus + Youth Exchange Programme.
Both Alan and Karen have Williams Syndrome which causes multiple developmental issues. These can include heart problems, narrowed blood vessels, musculoskeletal problems, and learning disabilities. The syndrome is estimated to occur in about one in 20,000 births and affects about 100 families in Ireland.
The camp, which was aimed at people with Williams Syndrome aged 13 to 30 years, focused on the theme, “Our Music, Our Culture” and took place at the University of Limerick.
Eighty people from 11 European countries attended the event. Activities included music workshops, theatre workshops, flora and fauna trails, an introduction to Gaelic games, and day-trips to Bunratty Castle and the Cliffs of Moher.
Commenting at the launch of the summer camp, Ann Breen, who is also the honorary president of the Williams Sundrome Association of Ireland (WSAIS ), said: “We chose ‘music and culture’ as the theme for the camp because almost all people with Williams Syndrome have hyper-sensitive hearing and some have perfect pitch and extraordinary musical talents.
“Throughout the week of the camp, we nurtured participants’ musical talent and their love of different types of music. We also showed our European visitors the best of Irish culture, from Gaelic games to trips to some of our best-loved tourist sites. In turn, we learned about other European cultures, including through language exchanges, where all the young people at the camp taught each other simple phrases from their own languages.”
Ann’s daughter Karen, who is now in her early 30s, has Williams’ Syndrome. “When Karen was very young, we noticed how much she loved music and music-related presents,” said Ann. “If she was upset, music would calm her. As she got older, we brought her to music camps abroad a number of times, and that’s when we discovered she has perfect pitch. She plays the keyboard, composes her own music, and has very definite opinions about the type of music she does and doesn’t like. The joy Karen gets from music inspired me to set up music summer camps for other people with Williams Syndrome.”
This was Alan Keady’s fourth time taking part in the European Youth Exchange programme. “The week in Limerick gave me the chance to meet new friends, as well as linking back up with friends and leaders whom I met before. Being able to play instruments and learn about new cultures I never heard of before was great.”
His mother, Nuala Keady, got involved with the association, which has 90 members, in 1988. She said the camp offered “informal learning in a fun setting”.
“Each day was different. We had people from 11 countries, including Sweden, Belgium, Germany, France, Italy, Spain, attending. There were workshops during the day on guitar, keyboards, voice, drama, art and Irish dancing, as well as musicians at night playing music.”
She outlined that there are 120 people with Williams’ Syndrome in Ireland, this includes children and adults. The oldest is 55 years. All have different levels of intellectual disability.
“Alan was diagnosed at 11 months. He cried a lot in the beginning. We eventually found out that he had high calcium levels. This was treated and he improved. There was some information on the tin of powdered milk he used, which was vitamin D and calcium free, and I wrote to the address there. They sent me back an information sheet. “
Nuala was put in touch with Ann Breen, the founder of the Williams’ Syndrome Association of Ireland, by her son’s consultant paediatrician Dr David Lillis. “I wrote to her and she wrote back to me and gave me loads of information. I then went to meetings of the association and got involved in 1988.”
I said to the specialists was there anything else wrong.
