Henry and Kerry Craukamp
I am a stay at home mom.( I had to give up my job because Abigail was in and out of hospital so often)
Manager of Rett SA
Age of parents:
41 and 39 years
Age: 9 years
Is this your only child?
Abigail has a 11 year old brother, Matthew.
Diagnosis of child: Abigail was diagnosed with Rett Syndrome 20th Jan 2015, 2 days after her 4th birthday. (Rett Syndrome is a miss mutation of the XX chromosomes and although it does happen to boys it is mostly girls that are affected.)
What are the biggest challenges facing your child on a daily basis?
For me the biggest challenge we face is the fact she is unable to communicate. Abigail is unable to tell me how she is feeling or how I can help her, that creates a lot of other challenges, like her health, she can't tell me or show me if she is in pain, her pain threshold is very high. We have visited hospital casualty 22 times in 9 years as a result.
What are the happiest moments you have with your child on a daily basis?
Abigail is a social bug and loves to show affection. Her smile shines so brightly and she has the most infectious laugh.
Are you a single parent or married? Married.
Has your special needs child had an effect on your marriage?
Having a special child puts a huge strain on your marriage both physically and emotionally, fortunately my husband and I are high school sweethearts and have been best friends for many years. The advantage of this is that we work well as a team - he is strong where I am weak and visa versa, but like any normal couple we have had our struggles with guilt and anger which we have inevitably taken out on each other.
What has your child taught you about yourself, both positively and negatively?
Abigail has taught us to slow down in life, to appreciate the small triumphs. She has also taught me to have a sense of humor and not to get upset about the small things that dont matter. I have learnt that it is OK to be angry and that tomorrow is another day. On the negative side I have learnt that I dont do well with asking for help. I feel I have to be incontrol of everything.
Are your family and friends supportive?
We are very blessed with family and friends who love both my children as if they are their own. Abigail is treated no differently from how all the cousins and grandchildren get treated. Her biggest hero is her brother and they share a bond like no other.
Do you take time out, if so what do you do to relax?
I try to take time out. I play netball and run, I also enjoy a good book. We are an outdoors family and when we need to escape we go the the Kruger...
What has made the biggest difference to your child’s quality of life?
I believe that what you put in is what you get out. My attitude is Rett Syndrome is just a label. I refuse to put my child in a box so I PUSH her to be the best she can be.
What is your dream for your child?
My child is in her own dream. She will be the best that Abigail can be. We will ensure she has all the tools to do so. My biggest dream for her is to one day be free from the trap Rett Syndrome is. That she may talk and run and jump and do all the things that fill her heart. SHE is my world, my heart, my courage. She gives me the strength to get up every day and be as Brave as she is.