Christmas is a magical time for children and their families, the warm weather makes us think of family holidays by the beach, kids playing carefree outside or learning to swim at the local pool. For 3-year-old Kaylee and her family, summer plans were interrupted when she was diagnosed with epilepsy.
Aleisha, Kaylee’s mother had noticed that her daughter would often fall over “we just thought that she may have vertigo, until one morning she crawled into bed with me, and the entire left side of her body went stiff”.
Kaylee was referred to the Children’s hospital for investigation and was diagnosed with epilepsy. Kaylee’s tests showed that the top layer of her brain had not formed properly, a condition known as Cortical Dysplasia “We were so lost; we were in a daze of disbelief” said Aleisha. ”We were heartbroken that our little girl had to go through this, knowing its was going to be lifelong. It winded us, we spiralled and for a while we blamed ourselves.”
The Epilepsy Queensland Helpline answers more 3500 calls for help every year, calls from worried parents just like Kaylee’s. “Epilepsy Queensland has helped us understand that we are not alone. There are people we can talk to, to teach us to cope with the new roles we play as a family” says Aleisha.
Epilepsy interrupts childhood and interrupts family life. Kaylee’s mum Aleisha explains “We withdrew from leaving the house and it was months before we had the strength and confidence to go out again. We helicoptered over her when she played and ensured she had one on one supervision. We put Kaylee’s kindy on hold and pulled her from swimming lessons and her younger brother missed out on the activities too. We are so aware that this affects her brother also and we are mindful of the impact our decisions have on the whole family”
Epilepsy Queensland educators develop management plans to reduce risks and help people with epilepsy to live well. Aleisha shares “they have helped us understand that there are resources available, to help us and to help Kaylee. Now, we work closely with her kindy teachers to have epilepsy management plans in place.”
We are happy to share those changes like adding Softfall to outdoor play areas and caution when climbing stairs have meant that Kaylee can once again go to kindy safety – just like her friends!
We have tried to keep things as unchanged as possible because we want Kaylee to feel she is capable of accomplishing anything says Aleisha. Epilepsy Queensland is the hope of Queenslanders for a life lived well with Epilepsy. For around 70 % of children, medication can help control their epilepsy, for Kaylee this has meant a trial of different drugs and doses that have reduced the frequency of her seizures from 5 per day to around one each week. “But it is managed not healed” says Aleisha, “I would love to hear its fixable”
Kaylee’s family can have hope for her future because of support from people like you. “Research and medicine have come a long way, but we have so much more to learn. We have come from times where these children would have been pushed to a corner and left without help -now we have options” Says Aleisha.
What is Aleisha’s Christmas message for other parents?
“Don't stop children from living their lives!”
This Christmas, you will help families like Kaylee’s to live well with epilepsy. Your donation today will help Queensland Children to LIVE life with epilepsy.
Thank you in advance of your support and generosity.
Chief Executive, Epilepsy Queensland
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