When Courtney was born she was a beautiful baby girl who we had been trying to have for five years. She was born with a mark on her leg and at four months of age we had it looked at by a specialist in Sydney where we lived. The outcome of this appointment was something that no one would ever be prepared for, and the journey afterwards is something we would never want any other family to go through. I will never forget that day and I guess at the time I didn’t understand how complex and lifelong this journey would be.
At the appointment the skin specialist told me that she thought Courtney had a condition called Tuberous Sclerosis Complex. After many tests and other specialists it was confirmed that Courtney had multiple tumours on her brain, kidneys and eyes. Courtney also has facial angiofibromas and hypomelatonic macules. So for the next couple of years we continued to make all Courtney’s medical appointments and carry on our busy lives in Sydney. I was running my own business, my husband was working in banking, and we were looking after our two boys and Courtney.
Just before Courtney was two, we decided to move back to New Zealand, to my home town Greytown. This would mean that we would be close to family and the caring community that I grew up in. This also meant we could get out of the rat race to enjoy all the time we could together as a family. The down side of this was that we were going to lose the fantastic medical support that we were getting from the TSC Clinic at Sydney’s Children’s Hospital in Randwick, Sydney.
Just after we moved back to Greytown, Courtney started to have daily seizures, so she had to go on medication to try to stop them. For the next two and half years the medications we tried and used made her fall asleep after each dose, which was two times per day. That was OK for the night one, but not the morning dose. It meant that as a todder she couldn’t do what other toddlers her age were doing. This happened from the age of two to the age of four and half years. On top of this Courtney was still having quite a few seizures every week and we had to keep increasing the medication, so longer sleeps happened and still the seizures came. Courtney’s behaviour had changed and she had become a very angry little girl. Six months ago we changed her medication as I decided to find a new paediatrician in Lower Hutt. The change of medication was amazing and I now have my little girl back. She has had a couple of seizures and we have had to do little increases, but she is now able to get on with her development, both academically and more importantly socially. At the moment we seem to hold our breath and touch wood that this drug continues to work.
Through the couple of years that her medication was not working she lost valuable time in developing her social skills and I think she doesn’t seem to have the confidence in making decisions as other children her age have. Even now on her medication, her choices and decisions seem to be blurry, so she doesn’t adapt well to change, hates loud noises and voices, and she doesn’t seem to cope with sudden changes of things happening around her and large groups of people. New environments and new people scare her. Courtney has now been at school for four weeks and we are now seeing amazing changes at school. She is making heaps of friends, learning so much and having a full day of fun.
My challenge now in New Zealand is Courtney’s medical care. In November Courtney had an MRI and a CT scan, and Courtney’s paediatrician and doctor asked if I could send them to Sydney. Luckily I still have a contact in Sydney, so we sent these off and are now waiting for a report. Our doctor and paediatrician are not TS experts so I need to ensure I know where I am going with Courtney’s care. The brain, the eyes, the kidneys and the skin, who to see and where. As a parent of a child with TSC and as a New Zealander, I would like to help raise awareness of TSC here in New Zealand. I feel blessed to have this wonderful daughter Courtney. She has given me strength to change my life. I believe I have been given this special daughter for a reason.
Courtney bring smiles to every person she meets and ensures us as a family live everyday as a special day as we don’t know what tomorrow will bring.