Evie’s story by Anne Tiplady
Meet Evie or Miss Evie as we call her.
We live in Victoria, Australia it’s one of the southern states. Evie was born in July 2010. She was perfect, great sleeper from the start. We would have to wake her for feeds. Everything was fine up until Evie was 8 months old when she had her first seizure and was rushed to hospital. Of course, when we got there she was fine and we were sent home. She had 3 more seizures in that week so she was admitted to hospital. Again, nothing happened while we were there but an EEG was ordered. The EEG came back normal but the seizures continued. We were sent to the Royal Children’s Hospital in Melbourne for tests. They did an MRI, CT, lumbar puncture, EEG and blood test. In the end, all we needed was the blood test that showed Evie has idic15. We of course had never heard of idic15 so started to research, which lead us the Dup15q Alliance and the support we needed.
We were put on a wait list for early intervention, in the meantime we took Evie to see a speech therapist privately. After a few months, they told us not to come back, and that they couldn’t help us anymore. So, the wait continued and we tried to help Evie as much as we could on our own. After 10 months of waiting we got picked up by an early intervention team. They come out to help Evie once a fortnight (every two weeks) for 30 minutes. We knew it wasn’t enough but that’s all we could get. We also tried different drugs to try and stop Evie’s seizures. We got lucky in October 2014 and she has been seizure free since.
Now at the age of 6 Evie is nonverbal, loves water and swinging on her swing. She goes to a great special needs school, which this year, she will only have 5 other kids in her class with 1 teacher and 3 aides. Her sleeping has been a bit all over the place but now is sleeping great, up to 10 hours a night. If she does wake, it’s only for, at the most, 2 hours. The only medicine she takes is for her seizures and she is also dairy free. One of the biggest issues for us is her lack of feeling pain. She has had a broken rib and leg but didn’t once, cry or complain.
The future for Evie is looking good. We have just moved into our new home we had built with Evie in mind. We have 5 acres of land for her and her little sister, Jordan, to run around on.