When Rachel Mullally found out that her new baby would be born with Down Syndrome, she and her husband dealt with shock, disbelief and fear. But Kitty’s irrepressible spirit means she is the life and soul of her family. Read Rachel’s story here, and discover how the Mullallys have benefitted from the Down Syndrome Centre Cork, voted Mykidstime Charity of the Year 2018.
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I am a mother to two beautiful children, Ewan who just turned six and Kitty who is two and a half, who both bring so much joy to my husband Eddie and I.
At 32 weeks pregnant, Kitty was diagnosed with Down Syndrome and also IUGR (intrauterine growth restriction). Of course, learning that she had Down Syndrome was a huge shock to us. Hearing this news, you think you are the only parents that have ever been in this situation. The fear of the unknown creeps in, believing your life has taken a road that you’re not sure you want to go down. We were lucky, and with the amazing support of our family and friends we realised that, first and foremost, we were still going to be parents to a new baby girl.
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A Down Syndrome Diagnosis
Down Syndrome is a genetic disorder where an extra chromosome joins at conception to the 21st pair of chromosomes, resulting in three 21st chromosomes. This is why it is also called Trisomy 21. There are currently 6,000 people in Ireland with Down Syndrome. This year it is estimated that 135 people will be born with Down Syndrome in Ireland, which equates to 1 in every 600 births.
When you are told that your newborn baby has (or will have) Down Syndrome, it is quite natural to experience a number of strong emotions, particularly during the first few weeks and months. For some parents it is one of shock as they have had no advance warning, for some it is disappointment that they were not handed the baby they anticipated, and for others it’s a worry of what lies ahead. All these emotions are very common, however in days to come you will realise that you have a tiny baby that requires the same love and attention as any other baby who has his/her own special little personality that will develop and inspire you over the years.
Our Little Fighter
Eddie and I had a little time before Kitty’s birth to try and get our heads around the diagnosis. Kitty was born at 34 weeks weighing just 3lbs, and to say we instantly fell in love with this little fighter is an understatement. She proved her strength from day one and has continued to show us this strength and amaze us to this very day. She spent the first six weeks of her life in the neonatal unit and came home on the day she was due.
Now, aged two and a half, we have fun, we have tantrums, we have big decisions about what to wear – yes, she is a diva! Kitty is full of life and has such a positive and determined personality. She keeps us all on ours toes; like any child her age she is getting up to all kinds of mischief and loves exploring, including lately climbing up onto everything in sight.
Kitty knows she is loved and, whatever the future holds, we will be facing it with a smile, because we are stronger than we thought we could ever be. We are able to face anything because this little girl brightens up our days with her cheeky smile.
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During the first year of Kitty’s life, I wanted to reach out to other families with children of a similar age to Kitty who have Down Syndrome. It was during this time that other parents, like myself, felt there was a lack of specific early intervention for our children in the South of Ireland.
Early intervention includes occupational therapy, speech and language therapy and other critical resources, with are essential for children with Down Syndrome. We felt not enough was available to our children in this vital early stages of their lives, so through this gap in services the Down Syndrome Centre Cork came to be.
The Down Syndrome Centre Cork is a new charity in Cork, founded in early 2017, but is affiliated with the well-established Down Syndrome Centre in Dublin.
The centre is dedicated to providing support and facilities to families and carers of children with Down Syndrome, providing a variety of different options from birth onwards. One of the most important benefits we realised from initiation was the ability for families to have a central hub for networking.
Many parents would admit that after receiving the news that their child has Down Syndrome, acceptance can be a lengthy and lonely process. The Down Syndrome Centre Cork is bright, colourful and filled with positive energy which provides parents an optimistic outlook for the future. The ability to engage with other parents strengthens acceptance. As a centre, our ethos is one of positivity, where instead of focussing on the negative side of the Syndrome, we look at the positive attributes our children bring to society.
We believe that every child deserves the right to reach their full potential, to be included in society and accepted by their peers. We believe that with the right support and services a child is ‘Able2’ reach his/her full potential in life. “I’m Able2” summarises our approach to promoting this ethos of positivity across our annual fundraising campaigns.
Life at the Down Syndrome Centre Cork
We have both made lifelong friends in the Centre and Kitty is currently attending a weekly SKIP (Special Kids Intervention Programme) class which both she and I love. SKIP is an early intervention programme that targets all areas of the child’s development, such as speech and language, fine motor skills, gross motor skills and most of all social skills. The aim of the programme is to give children the opportunity to congregate, to learn from one another and experience specific developmental intervention geared towards their specific needs. The primary goal being to prepare a child with Down Syndrome to go to mainstream school at the end of the programme.
Kitty is undoubtedly the life and soul of our family! She is loved by everyone she meets, and adored by her big brother Ewan. This is a journey I never imagined we would take, but I wouldn’t change it for the world. I promise you when I say this will change your life for the better.
For more information on the Down Syndrome Centre Cork, contact Rachel (Support Mum) through the centre on (021) 491 5616 or [email protected]. You can also visit www.dsccork.ie or check out the Down Syndrome Centre Cork Facebook page where hundreds of parents engage on a daily basis from all over the world.
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