Parents:
Wayne and Estelle Nabal
Profession:
Managing Director
Chairlady of Cure Rett SA
Age of parents:
42
Child’s name:
Abigail
Age: 9
Is this your only child?
No - older sister and younger brother
Diagnosis of child:
Rett syndrome is a neurodevelopmental disorder that affects 1 in 10,000 females born. Girls appear to develop normally till 6 to18 months of age, and then severe problems with communication, language, learning, coordination, and other brain functions become evident. Girls go through regression losing purposeful use of their hands and acquired speech. Other symptoms may include seizures, scoliosis, sleep disturbances, gastroesophageal reflux disease, to name a few. These social and engaging girls are cruelly trapped in dysfunctional bodies.
What are the biggest challenges facing your child on a daily basis?
Our biggest challenge is when she is frustrated and upset - we don't know how to help her, we often can't console her when she is crying. Taking it one day at a time is our mission. Facing each challenge as it comes.
What are the happiest moments you have with your child on a daily basis
When she giggles - often for reasons we are not aware of. When she looks into our eyes, it feels like she is looking right into our souls, this is her way of telling us she loves us.
Are you married?
Married.
Has your special needs child had an effect on your marriage?
We have just celebrated our 20th anniversary on the 12th of March. It has made us stronger people. We've had our ups and downs but through God's grace we try and live life to the fullest, everyday.
What has your child taught you about yourself, both positively and negatively?
Abigail has taught us a lot about patience, to remain humble and to appreciate the time we have together - good and bad.
Do you take time out, if so what do you do to relax?
We've come to the realisation that taking time out for ourselves and our other children is a necessity. We are outdoor people. As a family we enjoy camping. Everyone in the family has their own thing that they enjoy. I love photography. Wayne enjoys fishing with Jonathan and we all enjoy the new addition to the family, Nicole's horse TEX.
What has made the biggest difference to your child’s quality of life?
TV! Watching DVD's is a significant part of Abigail's life. She enjoys watching the Lion King and Barbie - which has kept all of us sane.
What is your dream for your child?
Our dream for Abigail is to find a cure for Rett Syndrome and get our girl back. We are actively involved in the special needs community and offer support to other families with Rett Syndrome in South Africa