“Within a month of her first seizure she had gone from being my 22 month old to a nine month old,” said Mac Schiller.
Mac Schiller, full time mum from Bournemouth, remembers the moment her daughter went from a normal healthy baby to a vulnerable and deteriorating one. Charley Schiller was only 22 months old when she was diagnosed with Tuberous Sclerosis, a genetic disease that can cause benign tumours to grow in the brain and other vital organs, triggering other labels such as ADHD, Autism and Epilepsy.
Information on this and other brain problems is available to the general public. However, Mrs Schiller still feels people are oblivious to these kind of illnesses, therefore the brain awareness week this week is something seen as positive.
This and other illnesses are prominent of being transmissible when the gene is in the family. “My husband has Tuberous Sclerosis. We knew it was a possibility and we had genetic counselling before we decided to have children and looking at the children and generations of people on our family they weren’t badly affected and we would go ahead and have a family.”
“We didn’t know how bad it would get”
Mrs Schiller knew they had a 50 per cent chance of having healthy children, however at that time they “didn’t know how bad it would get.”
“This generation of children on his (husband) sister side and ours, they are badly affected,” Mrs Schiller said.
Charley was tested for the first time when she was 3 weeks old, when depigmentation patches were found on her skin, the first sign of the illness. However for the disease to be diagnosed one more element was missing: seizures.
She had her first seizure in November 2005. Mrs Schiller said: “she (Charley) was having 300 seizures a day, which left her with brain damage between both her tempers.”
After that episode the illness developed very quickly and she lost her speech. It was then mid-February after several tests and an x-ray session, when she said the first word in almost four months. “I was in the waiting room with the other children and when she came out, she went to the vending machine and she was pointing to a bag of Maltesers. She was being so good I would let her have the bag of Maltesers.
“She got it and we opened it and immediately her whole hand went in the bag and I was like: no, just one. She looked at me, straight into my eyes and said two. I just burst into tears and gave her the packet,” said Mrs Schiller.
Charley is now 12 years old, she talks and understands more and has only one seizure a month, however she still sees herself as a little toddler. “My 12 year old is a 3 year old. She might feel that she is still a little girl, but she is becoming a woman and it is really hard for us to help her understand it,” she said.
Mrs Schiller recognizes that it has been exhausting taking care of her daughter, but at the same time she is a proud mum. “With every issue that she has, she is the happiest child on the planet. She is so lovely and loving.”
