Parents:
Ryan and Carmen Vessey

Profession:
Engineer
Projects Administrator

Age of parents:
37 and 32

Child’s name:
Bailey-Rae

Age: 3

Is this your only child?
No – two older brothers

Diagnosis of child:
Aicardi Syndrome, it is identified by the following: Only appears in females. Absence of the corpus collosum and Lecunae on the retina. Aicardi girls generally don’t walk or talk but each one is an individual and achieves things differently. Some have a lot more issues such as not being able to eat etc, but Bailey is pretty healthy overall. She started having seizures at 4 months of age, we struggled to bring them under control. At one point Bailey-Rae was having seizures all day, 20-30 mins apart, she is now on Convulex and now only has a seizure once or twice a week.

What are the biggest challenges facing your child on a daily basis?
At three years of age, Bailey doesn’t walk and doesn’t talk, she babbles a lot and we are teaching her a few signs to communicate better with her. She has low muscle tone and delayed milestones but physio is really helping with that. She now has splints and is very eager to walk when assisted. She also has some sensory issues, which our OT is helping with.

What are the happiest moments you have with your child on a daily basis?
All milestones that are achieved bring so much joy. Bailey is a very special little girl and lights up your heart with her smile.

Are you a single parent or married?
Married

Has your special needs child had an effect on your marriage?
Absolutely, but fortunately we dealt with Bailey’s condition differently and at different times and therefore have been able to support each other along the way. Ryan deals with things upfront and I deal with things when or after they have happened and so he has been able to support me at my times and visa versa. Our way is to get on with life and treat Bailey as ‘normal’. Sometimes Ryan will stand in with the boys when I am busy with Bailey. We do get frustrated at times but continuously try and communicate to make things better for each other.

What has your child taught you about yourself, both positively and negatively?
Bailey has taught us to love, perseverance and patience. And to appreciate the little things in life, like simply having her in our lives.

Are your family and friends supportive?
Yes they are but don’t live close by. Bailey is very particular with who cares for her and fortunately we have a very caring and loving caregiver who takes care of her while we are at work. My caregiver cares and treats my children as her own. She is also the perfect example for me. She never gets angry and screams she always deals with things in a calm manner and I want to be just like that. She talks and sings to Bailey all the time and makes sure her every need is taken care of, I never have to ask her to do anything as she just has it covered. Love her!

Do you take time out, if so what do you do to relax?
Being away from the children all day at work is time out. Although I love being with my kiddies, it can be demanding doing it all day long and so for me, working is MY time, where I get to have adult conversations, exercise my brain and feel rewarded occasionally for a job well done. I love coming home to my family after a tough day at the office, it takes all my worries away. Fortunately I have a job with a little flexibility in that I get to take Bailey to therapy once a week and I get to spend one afternoon with my boys.

What has made the biggest difference to your child’s quality of life?
The therapy that she receives on a weekly basis, both OT and Physio, have helped Bailey to progress beyond our hopes.

What is your dream for your child?
That she continue to progress and grow the way she has to date and that she learn to walk and perhaps talk to us one day.