A TEENAGER who suffers from a life-threatening form of asthma may be one of the first children in the UK to try a new drug, to make sure he is well enough to perform at this year's Llangollen International Musical Eisteddfod.
Chorister Rowan Gillard's family say singing is helping to keep him alive, as the deep breathing involved alleviates the symptoms of the 'brittle asthma' which has landed him in hospital many times, including a spell on a life support machine as a small child.
Last year Rowan had to be hospitalised after a severe attack, and his family agreed for him to be injected daily with high doses of steroids, to make sure he was strong enough to perform at the 2014 International Eisteddfod in Llangollen.
Now doctors are investigating whether he can be approved to try high doses of a drug called Ciclesonide, which has just been licensed for children with asthma in the UK, to ensure he is strong enough to make the journey to North Wales again this July for the Eisteddfod which takes place from Tuesday, July 7, to Sunday, July 12.
Schoolboy Rowan, aged 15, sings with the Highcliffe Junior Choir in Dorset, and says he looks forward to his week in Llangollen each year.
He said: “It would be really disappointing if I couldn't go to the Eisteddfod, because it's a really fun week. It's such a great opportunity.
“I've been singing for years but Llangollen is about the only time that I get nervous. The scale of it, you never realise how big it is until you get there The audience is about 5,000 people and it's a significant part of my life to be able to do it.”
In a piece for his school newsletter after the 2014 event, Rowan's fourth International Eisteddfod, he wrote: “Eistedfodd day, is (for me) the highlight of the week, I love the feeling of being on stage, especially in Llangollen, the sheer size of it is a daunting prospect but the adrenalin rush that you get from it is second only to being on a roller coaster!”
Rowan, who has two brothers, Callum, 20, and Aiman, 13, has been singing with the choir since he was eleven. He said: “Singing has been part of my life for a very long time. And I can only compare not doing it to when I don't have a lot of medication, my breathing gets worse.
“I don't know how it helps because I'm not a scientist. All I know is that singing does alleviate the symptoms.”
Mum Alison, a nurse, said the deep breathing that comes with singing helps Rowan to expel carbon dioxide-filled air from his lungs.
She said: “Singing is so good for his lungs.
“Rowan has brittle asthma. It means that his condition is very unstable and it's very difficult to control. For the first seven years of his life he was in and out of hospital, and he did have to be taken into intensive care at one point and that was really scary because we thought he might not survive.
“Then he had a seven year gap where it eased up, but when he was 14 it flared up again and he was very ill indeed last year.
“He had to be taken into hospital to have massive doses of steroids through a drip, for three days, every 28 days, for four months. We timed it with the doctors to make sure he could go to the Eisteddfod.
“When it's bad it's very serious. He becomes totally debilitated because he can't breathe, he has disturbed sleep, he can't do exercise. It’s awful to see him struggling like that because he literally can't get enough air.”
Eilir Owen Griffiths, Musical Director of the Eisteddfod, said: “This is a really uplifting story about the tremendous bravery of this young man and what singing does for him.
“It is a joyful thing and it is good for you and we so hope to welcome Rowan and his family here again this year – and for many years to come.”
Alison was concerned Rowan would have to have the same course of hospital treatment this year, to ensure his condition was stable enough and he was strong enough to spend a week away from home. One of the side effects of taking the steroids is that it makes Rowan appear “puffed up”.
But doctors have now said they want to see if they can instead try him on a strong inhaler using a steroid called Ciclesonide, which has only recently been licensed for children with asthma in the UK, as it can cause stunted growth. He would have to take four puffs of a high dose, twice a day and monitor his condition.
Both Alison and Rowan are keen to let other children with asthma know about the benefits of singing – and that even if they are very ill it can actually help rather than be another thing they can’t do.
Alison said: “Most people don't appreciate its not getting the air in that's the problem, it's getting the tainted air out, which is full of carbon dioxide. When you are singing you have to control your breathing and it helps push that contaminated air out.”
“He generally just gets on with life because he's never known any different, but he does get fed up when he's not well.
“Last week he couldn't go to practise because he was so ill. He texted me to say he felt awful and he couldn't make the walk from school to choir and I had to go and pick him up.
“He hates missing it, because aside from enjoying it, he knows it does him good.
“Singing is his passion, and the Eisteddfod is the thing he looks forward to all year.”
Despite his asthma Rowan had a very successful 2014, picking up the Vocal Cup for Most Promising Boy Singer at the Southampton Festival of Music and Dance and his own choir awarded him the Amada Ditt trophy for the Most Expressive Singer in the Christchurch area.
Mary Denniss (corr) who runs the Highcliffe Junior Choir, which has 30 members, aged between 12 and 18, is also a vice-president of the Eisteddfod and has been bringing the choir to Llangollen since 1978.
She said: “Rowan is one of the keenest choir members, he always turns up full of beans and works really hard to make sure he's included in everything. It's incredible the effort he puts in and it's a pleasure to work with him.”
If Rowan is one of the stars of this year’s Eisteddfod then there are many others including American song-writing legend Burt Bacharach who will open the concert programme on Monday night, July 6.
There is also top UK tenor Alfie Boe, who will sing songs from the Musicals at the Thursday evening concert, one of the highlights of another packed week which will begin on Tuesday with Children’s Day and the Parade of Nations, led by Eisteddfod President Terry Waite before the evening Heart of Llangollen concert featuring a galaxy of international talent.
Wednesday’s programme will include a new competition for the International Young Musician of the Year as well as the Children’s Choir of the World while Thursday’s competitions will see another first, the International Voice of Musical Theatre Trophy.
Friday’s Open Category for choirs will showcase styles like gospel, barbershop, jazz, pop and glee styles and will also see the International Voice of the Future decided with the prize including the chance to sing at one of the evening concerts the following year.
The Blue Riband event, the Choir of the World for the Pavarotti Trophy, is decided on Saturday night as well as the Open Dance competition and Sunday sees the Eisteddfod let its hair down for Llanfest before the climactic final concert.
The feelgood atmosphere spreads out to the Eisteddfod field through the week as hundreds of competitors and thousands of visitors mingle with spontaneous performances breaking out.
Visitors can enjoy live music at the 200-seat S4C Stage, join in with dance workshops or just soak up the heady atmosphere throughout the week world-class competitors perform in a spectacular celebration of cultures with stunning choral music and lively traditional dance, especially on Folk Friday when the outdoor stages will feature world-class music and dance.
To book tickets and for more details on the 2015 festival go to the website at www.international-eisteddfod.