TOM'S STORY - THE CAPTAIN OF THE TEAM
Seven-year-old Tom Riches hasn’t had a great year so far, but when he ‘captained’ Team Tombo for Epilepsy on the five-kilometre Run Melbourne challenge in September he achieved something very important to him: to raise money for the Epilepsy Foundation.
This is the second year that Tom, his parents Paula and Chris, brother James and friends and supporters travelled from Colac in Victoria to do the charity run. In 2011, their team of 34 people raised more than $3,000 and Tom was very definite when he said, “this year we will raise more than that”. He did just that, raising over $6,500 for the Epilepsy Foundation.
The idea started when Paula did the Mother's Day Classic in Ballarat in 2011. “When we were driving home, Tom asked me why I was raising funds for breast cancer. When I explained, he said ‘we should raise money for the Epilepsy Foundation to help people who have worse epilepsy than me’. That’s how Team Tombo was formed and we came to do the Run Melbourne last year. It was all Tom’s initiative.”
Tom was diagnosed with epilepsy in 2007, when he was two-and-a-half years of age. “We first felt something was wrong when we noticed that Tom would seem to be day-dreaming,” says Paula. “I’d notice that, for example, he would be sitting on the bench and then stop whatever he was doing, and after a few seconds come back to what he was saying. Then, leading up to Christmas 2007, we had a photo of him where his eyes were rolled back, so we knew that something wasn’t right.”
Even his dad Chris says he didn’t notice anything wrong at first. “Then the absences started becoming more and more frequent and we knew we needed to do something.”
Paula and Chris took Tom to the Royal Children’s Hospital in Melbourne where Tom had an EEG (electroencephalogram) and was diagnosed with the form of epilepsy called absence seizures. Absence seizures involve a brief, sudden lapse of consciousness and are more commonly associated with children. It can appear that the child is staring into space for a few seconds, and in some cases the eyes will roll back. Medication can help to control the seizures, although it may take some time to get the right level of medication.
Absence seizures can be difficult for the community to understand because the seizures are not so physically apparent as tonic clonic or ‘drop’ seizures. Compared to other types of seizures, absence seizures might seem mild, but they can be serious because of the loss of consciousness, particularly with more active activities such as swimming or climbing.
“Tom’s seizures can last from five seconds to half a minute,” explains Paula. “We’ve had a few occasions when he’s been unconscious for longer, but luckily those occasions haven’t been regular. We have been very lucky because the medication has really helped in cutting back the number of seizures he was having."
“Tom’s epilepsy is not so obvious to people who don’t understand absence seizures,” says Paula. “Because people don’t actually see anything happening with Tom, they sometimes will say ‘are you sure there’s something wrong’. But there’s still the stigma of epilepsy. He won’t get invitations to things because people just don’t understand and they’re scared of what they think it is."
“But we have amazing friends who want to learn everything they can about the epilepsy so when he goes to their places, they know what to do if anything was to go wrong. Having confidence in people like that is really important.”
Tom and his parents see the neurologist at least every three months, but this year they have had more regular fortnightly visits. He also sees a neuropsychologist. For Tom, the hospital visits are a mixture of good and bad. “I like going to the Children’s Hospital because they have touch screens and games and toys," he says. "And I like my doctor. But I don’t like having EEGs when they put all those things in your head."
One of the impacts of absence seizures is that children may find it difficult to learn because they keep on missing things. Since Tom has been at school the issues associated with the absence seizures have been more obvious.
“The main impact of the epilepsy on Tom is the extreme tiredness throughout the day,” says Paula. “And there’s the constant readjustment of the medication to get it right. One of the medications you could see was affecting his brain function, and so it also affects behaviour. He also doesn’t have a great attention span, and testing has shown that he has deficiencies in following instructions. It’s those things that are different.”
This second year of school has been more difficult for Tom, and Paula and Chris are concerned about his being able to keep up to the standard expected of a child in grade one. “The education system says that at this stage, a child should be at a certain standard. Trying to get Tom to that stage is very difficult. But he has good persistence with things, and we just try to make education fun. You just want to give your child the best chance." And, as Chris says, “It’s important to focus on the achievements Tom’s making."
The first contact Paula and Chris had with the Epilepsy Foundation was when they called in at the Foundation on one of their visits to the hospital in Melbourne. “I guess with a second child you have the confidence to cope with most things,” says Paula. “But as Tom got to school, we felt we needed more information.”
Paula has contact with one of the Foundation’s experienced counsellors, Jan Burns from the Geelong office. “To just be able to have a chat on the phone, or to call into the office, just reassures you that you’re on the right track,” says Paula. “You just want to do the right thing by your child.”
Tom has an epilepsy management plan in place and it proved to be a very practical help when he wanted to participate in a cricket camp earlier this year. “I rang and explained about Tom, and it was great that the coach already had knowledge about epilepsy and knew what the management plan was. He had a great time."
It is also small things that can make a difference to a child with epilepsy. “One day last year we had a call from the office in Geelong to say there was a Christmas present for him donated by a local business. That meant the world to Tom – just to make him feel special from time to time."
This year again, the bus from Colac brought Team Tombo for Epilepsy to do the Run Melbourne challenge, with Tom as captain. “Last year there was lots of support from the Colac community and Tom’s school was supportive. We knew lots of people would be supporting the Epilepsy Foundation again either running in the event or donating to Team Tombo.
As Chris says, one of the best things about being involved in the run is that it starts the conversation about epilepsy. “It creates great awareness. A lot of people have epilepsy but it’s still a very hidden condition. So many people have said to me that they know someone close to them who has epilepsy.”
Tom, Chris and Paula keep Tom’s epilepsy challenges in perspective. “Last year I used the Mother’s Day Classic to improve my fitness and then my mum was diagnosed with breast cancer. Chris’s niece was also diagnosed with leukaemia. Mum is doing well now, but it puts Tom’s condition into perspective. Other people are dealing with much more difficult situations.”
The Riches family had two objectives in leading Team Tombo for Epilepsy again this year: to raise awareness of epilepsy in the community and to raise funds for the Epilepsy Foundation. More specifically in Tom’s words: “to raise money so they can help people who have worse epilepsy than me."
Good luck for the future, Tom. We think you have a very bright future ahead of you.
May 2012
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