Danny Boy: The young Tipperary Changemaker shining a light on rare medical conditions

Elvis-loving nine-year-old Danny Molloy from Drangan has become one of the stars of a new campaign highlighting those who suffer from rare conditions in Ireland.

The I Am Number 17 campaign was launched last week by Minister for Health Stephen Donnelly, and features 17 Changemakers - individuals from all over Ireland living with a rare disease - who are sharing their stories to promote better understanding and awareness of rare diseases in Ireland.

Among those featured is Danny, who until last week was described as a SWAN - someone who has a Syndrome Without a Name.

However, following genetic testing at Christmas, his mother Carol, said that, since last week, they were now able to put a name on his condition, Okur-Chung Neurodevelopmental Syndrome, which is so rare that only 50 other people have it globally.

OCNDS is characterised by delayed psychomotor development, intellectual disability with poor speech, behavioural abnormalities, cortical malformations in some patients, and variable dysmorphic facial features.

It has only been discovered since 2017 so hence it wouldn’t have shown up in Danny as he was born in 2014.

“I am still in shock,” said Carol, who is Danny’s voice in the campaign and who has since been put in touch with a foundation in America looking into the syndrome.

“They are researching the condition and, hopefully, will be able to help out and make sure Danny is getting the right support and that we have everything in place. What is known about it is that when kids reach adolescence things can start to change.

They want him to have a scan on his spine, tests on his immune system, they want his kidneys to be tested. We have a lot going on,” she said.

Carol describes Danny’s condition as “quite complex”, but points out that there is a team in place and he has been getting the right care.

“He has spent more time in hospital than we would have at home in the last two years. He has had open heart surgery twice but his health has been a lot better and able to attend school and is doing really well,” she said.

Danny, who is non-verbal, attends Scoil Aonghusa in Cashel, and Carol describes his teacher Laura Ryan as “fantastic”.

“He is getting on super in school for the last while, so he loves going off.He gets collected every morning. They bring them swimming and pony riding. They are fantastic in Scoil Aonghusa,” said Carol.

“Danny, who has a three-year-old sister Willow, has so much going on, but he is a lively little boy. He loves rock. He is an Elvis superfan. He loves Queen and AC/DC. He moves to the music. He has sounds so he can hum an Elvis song and you can tell what it is. We are not into rock music, but he just loves it. He is not into toys, but he goes into Golden Discs and picks out cds. He loves comic books, reading, and uses Lámh. He has an AEC device so we have been using that for the last year or so. He is brilliant with that. He can reply to you and tell you his name and where he lives. He has quite a good understanding of stuff but he has no speech. He is absolutely spoiled,” she said.

While Carol is Danny’s full time carer, she is full of praise for the family support she gets and also singles out the communities in Drangan and around Fethard for their help.

Admitting that it had been a “difficult few years”, Carol said: “You take one day at a time. I have had good family support that has been super minding my little girl when we have to spend overnights. It is important to have family support. Only for them I don't know what I would have done,” she said.

Going back to the I Am Number 17 campaign, Carol said that the point of it was that it can be very lonely and isolating when you are living with a rare condition but there was a whole community out there.

“One in 17 have a rare disease. I was shocked by that. Danny is rare, but together we are not,” she said.

“It is lonely and isolating but you can reach out and there is support. I got involved through Rare Ireland, who are supporting families and carers living with rare diseases and they help you connect with other people and they have a support group that I have used. If there is anyone out there with a rare condition that is feeling lonely and isolated, Rare Ireland is a good place to start,” said Carol. “You are not alone and there is a whole community out there.”

Speaking at the launch last week, Minister Donnelly said that campaign was an important step in raising awareness of rare diseases and recognition that while individually rare, collectively these conditions had significant impact in Irish society.

“I would like to commend the 17 Changemakers. Their individual experiences are so important in fostering a better understanding of these conditions which are far more common than many may think,” he said.

As well as Danny, among those lending the voice to the campaign is activist and sports writer Joanne O’Riordan, who said: “I am happy to lend my voice to the I am Number 17 campaign to raise awareness and increase understanding of rare diseases. As someone living with a rare disease, my journey in the world of sports has taught me the power of visibility and representation. We are not defined by our conditions, but they do shape our experiences. It’s time that the rare disease community sees themselves reflected on and off the field. I hope by sharing our stories, those living or caring for someone with a rare disease feel seen, heard, and supported.”

According to the National Rare Diseases Office (NRDO), rare diseases affect around 6% of the population in the Republic of Ireland, accounting for at least 300,000 individuals.

“Rare diseases can be devastating for patients and their families,” said Laura Egan, Rare Ireland. “The I Am Number 17 campaign is an opportunity to give a voice to those living with rare diseases and to raise awareness of the need for more research and support.”

“Rare diseases are a significant public health issue in Ireland," said Vicky McGrath CEO of Rare Diseases Ireland. "The I Am Number 17 campaign shines a light on the lived experiences of those living with rare diseases. It provides not just insight into the experiences of the 17 Changemakers, but also tells us about their hopes, dreams and aspirations. There is much we can learn from them.”

The campaign was initiated and funded by Takeda, a global leader in pharmaceutical research and development, in partnership with Rare Diseases Ireland (RDI) and Rare Ireland.

The Changemakers have been photographed for a very special exhibition by award winning photographer Julien Behal which is on public display at The chq Building in Dublin.

For more information about the campaign, how to get involved and learn more about rare diseases visit: www.iamnumber17.ie