This is a story that will give hope and dreams to anybody suffering a serious or debilitating illness or condition and give them the strength to realise that things do get better.
Taylor was born in 1992 a beautiful first daughter for our family and the first girl on my husband’s side in a very long time. She was born 5 weeks early and came into the world with what we thought was a perfect start to our lives. She was a gorgeous baby and progressed well into her first year of life. Towards the 8 month mark she started to fall behind in her milestones and had what we now know was infantile spasms. Our lives were to change dramatically from that day on.
Taylor continued to have uncontrolled epilepsy despite numerous medications or combinations of those medications. Due to her severe epilepsy it was decided in consultation with her doctors and family to travel the path of surgery. This was done with much trepidation but also with hope that she may finally be seizure free. So in 1996 Taylor had her surgery, unfortunately with little success. So, we battled on trying to live our life as normally as we could. Taylor went to school in a fantastic setting, we were lucky to get her into a support unit for cerebral palsy where the school teacher, aide and equipment were in abundance. There she thrived and continued to learn despite her difficult seizures. She tried many things and had no fear; she wanted to join in and do many sports because her big brother did. So we enrolled her into dancing, T Ball, swimming, horse-riding really anything that she wanted to do. The people, coaches, teams, teachers were really fantastic and tried to assist her in anyway. Taylor has a mild moderate intellectual disability and sits closer to the moderate end of the scale so it is often difficult to reason with her when she wants to do things but finds them too difficult. We found that due to her cognitive ability that she had trouble following team instructions and didn’t really fit into team sports. Her memory was poor especially with bad seizure days and often fell behind in the teams, causing her to become frustrated an upset easily.
One day my husband saw an ad for little athletics and thought this might be a good idea as it catered to all ages and you could be a little or a lot involved. So off we went to a try day to give it a go. Well it was amazing Taylor loved it and thought it was just so much fun. Taylor joined the Girraween Club and met some amazing people who took her under their care and looked out for her. She would often start races only to have seizures whilst running down the track often falling over only to pick herself up and continue on, or being at the start of the race to false start due to a seizure nothing fazed her or the staff or other athletes. The most amazing thing for Taylor was that she was good at it, she ran like the wind and was known as the Box Hill bullet (we used to live in that suburb) now she’s known as the Oakville Ostrich (due to a house move).
Taylor has partial complex seizures everyday sometimes 4-6 a day lasting about 1-3minutes in duration and differing in severity. These are just managed by being aware and keeping her safe as sometimes she falls over and can hurt herself. However then we have the darker nasty ones, which cluster; ‘’Cluster Seizures” which are the same seizures though greater in intensity and severity and time. They can go on for many hours the longest cluster for 16hrs whilst in hospital. We intervene with many drugs that being Midazolam, Clobozam and Dilantin at the time and hope it stops quickly but sometimes to no avail and we just have to wait it out. This can happen twice a week for many weeks and then it gives us all a break only to start up again. There is no trigger and it is totally random. We have seen Taylor compete only to be struck by these clusters totally putting her out of action.
Taylor continued to develop and grow into a beautiful teenager and started high school in a support unit in a class of 8 students. Luckily it was a school that was interested in her talents and supported her athletics. At the time I was not aware that when schools had athletics or swimming carnivals events were also held for AWD’s (Athletes with a Disability) who competed just like everybody else up to the State level. Taylor got the chance to compete and excelled in track and field 100m, 200m and Long Jump, winning many medals along the way. It was here she was introduced to Special Olympics and found a club in Sydney West where she joined and began competing. It was here that she found people of her own abilities intellectual social and competitive. She was given the opportunity of trying many sports and went to her first Junior National Games in Canberra competing in track and field and soccer. She again excelled and won gold and silver in many events. This then progressed over the years to the Senior National Games in Adelaide, again winning many events. These amazing feats led to her being selected for the World Summer Games which were held in Athens, Greece in 2011.
This was fantastic but also very scary for us. She would be away for 3 weeks with the team, away from her parents, away from the people who knew her and her seizures, how she would cope, would it be too much. The day finally came after many presentations and meeting the Governor General and being presented her Australian uniform, there were many family tears I can tell you and we were nervous beyond your imagination. Well she went, coped well, continued to have seizures as we knew they would but she held up and with strength and determination competed and competed well. She brought home two gold and a bronze medal. We were so proud of her and her doctors cannot believe her ability to soldier on. We as a family are still amazed to this day but she continues to strive for excellence.
Taylor continued to compete and moved onto the senior athletics at Girraween, where we competed at many carnivals. We were approached by the coaches and encouraged to let Taylor try some events in the NSW Athletics Club circuit for AWD’s. This proved to be very successful for Taylor where she went onto do extremely well at the higher level. Taylor was asked to go the to the Arafua Games held in Darwin where she won a bronze medal in Long Jump from there it only got better. Last year Taylor competed in April in the Athletics Nationals where she won a gold medal in Long Jump and was crowned the Australian Champion which she will contest this year and hopefully keep her title. She also holds the record for F20 under 20year olds Triple Jump champion. From here Taylor continued to excel and was given funding from Athletics Australia and has competed in the Global Games in Italy and The World International Paralympic Championships in France last year. We are now working towards 2015 where she will hopefully be selected to go to Qatar and then onto Rio in 2016. We can only hope, however she has really done herself, family and country proud.
Taylor’s seizures continue to be a problem so we are currently being assessed for further surgery, at the time of writing this she will be having the electrodes implanted for further monitoring and gathering of information who knows one day we may be seizure free but until then keep on running Taylor.