Aine Beatty, who set up the Downs and Proud group in Lurgan, said all she received when her baby Jay was born was a black and white photocopy about benefits.
However, the indefatigable Aine was determined to change things and the group Downs and Proud, which she set up to help support parents and families of Down’s Syndrome children, has just launched a special ‘Buddy Pack for parents of newborns with the condition.
Aine has worked tirelessly to help defeat negative attitude towards Down’s Syndrome and, with her inspirational Jay and all her family, has enchanted people by showing the beauty of children with Downs Syndrome and what pride you can have in their achievements.
Aine admits that when Jay arrived into the world on December 23, 2003 she was ‘really shocked’ that he had Downs.
“The whole time I was in hospital cried, to the point that the nurse said she had never saw someone cry as much in all her days in the hospital. I didn’t understand much about Down’s Syndrome but the one thing I did know was that I loved the little baby in my arms. I just kept thinking ahead and worrying about how life was going to treat Jay.
“On Christmas Day we got out of hospital and I began to think more clearly and as long as Jay was with me, I only had to look at him and I knew everything would be OK.”
Soon after Jay was rushed to hospital for heart surgery. “From that journey driving behind him in the ambulance I have never cried again about Jay having Down’s Syndrome. My biggest regret is that I didn’t have balloons tied to Jay’s cot when he was born and that we didn’t crack open the champagne to celebrate him having Down’s Syndrome because if I had known then what I know now and even had an insight of the amazing journey that we all have been on with Jay, it was truly worth celebrating.
“I have not had to worry at all about how life has treated Jay because Jay is making his own mark in life, he has reached so many goals and he has touched the hearts of so many people,”
The ‘Buddy Pack’ is truly packed with important information and sound advice.
Most parents find the news that their child has Down’s syndrome as a great shock. A helpful booklet deals with how to cope with finding out and has some sage comments from a young adult with Down’s syndrome and a mum who has been through the experience.
It deals with many first questions such as what exactly is Down’s Syndrome to the tougher issues of what if parents don’t want their baby.
The booklet deals with the task of telling other members of the family and friends and a guide to undestanding your feelings as a new parent. It also deals with practical matters such as feeding your baby and your baby’s development. There is a long list of useful contacts and organisations.
Aine’s dream that other parents would not get the same shock as she did when little Jay was born has come true and now the ‘Buddy Pack’ will soon be distributed in local hospitals. With the backing of the Downs Syndrome Association, Downs and Proud have spent a lot of time and funds on producing the special Buddy Pack to bring into local hospitals.
The Downs and Proud group are to meet midwives, medical staff and neonatal staff next week to talk to them about the pack.
“We want them to know what the parents do hear and what they need to hear,” said Aine who said the trust had been very open and responsive to the pack.
Aine and Martin Beatty’s daughter Olivia, who is just 17, and is a co-worker with Downs and Proud has also been working as a speech therapist for the charity. She has taken part in specialist courses and carries out classes to 21 children in the area.
Jay, who is now 11, has captured the world’s hearts with his love for Celtic. Aine said she and the family have been overwhelmed with the support of the local community.
“The messages we have got are unbelievable,” she said. “It does give us motivation. We have had messages from people in countries we had never even heard of and had to have it translated. It just highlights the positive and that is our aim.”
Meanwhile a song by Charlie and the Bhoys called Little Jay is now number one in the UK Easy Listening charts. All proceeds to Downs and Proud.