Parents
Connor and Kim Kinsella
Profession:
Architect and DAD
Operations Manager, MOM, SA Local Ambassador for UNIQUE
www.rarechromo.org
Age of parents:
52 and 52
Child’s name:
Bailey
Age: 14 years
Is this your only child?
One sibling Jade, 17 years old, who Bailey just adores
Diagnosis of child:
Rare Chromosome Disorder - Tetrasomic 15q11.2-15q13.2 and Trisomic 15q13.2-15q13.3 which is a Chromosome 15 Duplication, extra copies of Chromosome material on Chromosome 15
What are the biggest challenges facing your child on a daily basis?
That she is not always understood because she has a speech delay so has limited speech and is unable to verbalise everything, she understands most things but has limited concentration too. She has developmental delays so certain tasks are difficult for her to do ie drawing, colouring in, reading, writing.
What are the happiest moments you have with your child on a daily basis?
When she says "I love you Mommy/Daddy Pig" and when she makes us laugh...she has her Dads sense of humour, her hugs are HUGE and she loves giving them
Are you married?
Married.
Has your special needs child had an effect on your marriage?
Initially the news was daunting, we were not sure what we were going to face with the cards we were dealt but together we just knew that we needed to find out the most we could and embrace the journey. It has grounded us as a couple and if anything makes us closer as a family unit as we have a common goal.............our children
Are your family and friends supportive?
YES, we are surrounded by the most loving, caring, understanding people we call FAMILY.
What has your child taught you about yourself, both positively and negatively?
Positives - To slow down and appreciate a leaf falling from a tree, or the feeling of water running through your fingers, laughing until you cry, tomorrow is really another day, "to appreciate everyone for who they are (from the mouth of Jade)"...... to live in "Baileys world"
Negatives - that we live such a pressured, hurried life and we are sometimes far too impatient.
Do you take time out, if so what do you do to relax?
We try to spend most weekends at home so that Bailey can enjoy our beautiful garden and pool , she loves the outdoors so she is her happiest when she is picking up feathers, leaves, stones, swimming, swinging or just going for a walk. We love escaping to the beach with our family.
What has made the biggest difference to your child’s quality of life?
That she is loved and accepted for who she is and that she has our unconditional support. That we allow her to be a part of everything we do, that she's included and most of all that she has a BEST FRIEND.......her sister Jade.
What is your dream for your child?
Our dream is that she never feels alone or isolated and that through awareness and advocacy we can make sure that she is always counted. That she can learn enough life skills to give her the confidence to be herself and reach her own goals in life and that she can one day find her voice and have a loooooong conversation with us and tell us in her own words what her dreams are.
