Best friends Zac Livesey and Ollie Hartley share more than a love of football and superheroes, as they are both battling a rare form of epilepsy. NATALIE WALKER speaks to their mums Nicola Livesey and Sian Hartley, who have also struck up a strong friendship and are now joining forces to raise awareness and funds for two charities which support their children
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When Sian and Jonathan Hartley were told their five-year-old son Ollie had focal and generalised epilepsy, they felt they were the only parents to go through the trauma.
But when discussing his condition with his teacher at Ashbridge Independent School, they were soon alerted to the fact another boy in the same class also had epilepsy.
Sian, from Preston, says: “It was quite strange. When we were discussing things with Ollie’s teacher, it was suggested we speak to Nicola, as her son had a similar condition.
“We have struck up a good friendship and Zac is one of Ollie’s best friends. It is fabulous having that friendship and being able to talk to someone else who is going through the same fears and worries you are.”
Ollie suffered his first seizure last August and, following a series of tests, he was diagnosed in November.
Sian, 42, adds: “We were very lucky that our GP picked it up very quickly. Ollie has focal and generalised epilepsy with absence seizures.
“He doesn’t have the typical seizures you associate with epilepsy. He has focal and generalised seizures and so has four different types of absent seizures, where his eyes are open but he is not functioning,
“His longest has been about four-and-a-half minutes. It is like his body is frozen but he is conscious of it. He can’t move or operate. He can have up to 20 smaller seizures a day and be absent for a couple of minutes.
“Other seizures can affect his bladder and bowels.
“It is very difficult for me and my husband to watch as we feel very helpless.
“There is always that worry of getting to the five-minute point and calling an ambulance.
“But Ollie is incredibly brave and we are very proud of him. He is very bright and understands his condition. He can have days when he feels sad and frightened about it. But we are very lucky as we have amazing family and friends around to support us.
“There is a chance he will grow out of it. He was experiencing the bigger seizures once a week and smaller ones daily but we have not had any major seizures for more than a month.
“He has had two smaller seizures in the last six weeks and the medication is working for him. We are so thrilled.”
Zac Livesey, from Penwortham, was diagnosed with myoclonic astatic epilepsy (or Doose syndrome) two years ago after suffering a seizure at nursery and
having subsequent head jerks.
Nicola says: “Zac has four different types of seizures. He has myoclonic jerks where his arms go up in the air. They only last a few seconds, but he has started to lose speech for up to two minutes sometimes. He has four of these a day whilst he is awake. He also has them in his sleep, so he is tired a lot.
“It can affect his learning but it doesn’t seem to have at the moment. We worry about Zac constantly. We check him when he is sleeping to make sure he is breathing and not having a full-blown seizure.
“He can also injure his head, especially if he is standing, and he can head butt things, so we are constantly on edge.”
Zac, who has a younger sister Belle, four, is currently on medication and he is to start a ketogenic diet to
reduce his seizures.
Nicola, 37, adds: “We had trialled a new medication in February, but it made him emotional and aggressive and he had more seizures, so he had to come off it. We are looking at a ketogenic diet which is quite successful for helping reduce seizures for his type of epilepsy. The diet is specific for Zac. His type of epilepsy affects only one per cent of children who have epilepsy, so they are unsure of the future. They are hopeful that with the medication and
ketogenic diet he will become seizure free.”
Nicola and Sian have now set up Team ZOllie to raise awareness and funds for Roald Dahl’s Marvellous Children’s Charity and Young Epilepsy, which support children with the condition, as well as other serious illnesses.
Nicola says: “Team ZOllie is made up of both sets of parents, but also Zac and Ollie’s teacher Hannah Seaton and the teaching assistant Vanessa Roskell, as well as Amanda Elleray and Steph Steadman who have children in Zac and Ollie’s class. I also teach at Ashbridge and have used resources from Young Epilepsy to help teach the Year 5 and 6 children about epilepsy and to make them more aware.”
Sian adds: “I feel we are on the better side of the epilepsy now, and so it is time to give something back.
“There are two epilepsy nurses at Royal Preston Hospital and they are amazing and have provided so much support. We just want to say thank you to everyone who has supported us.”
Team ZOllie will take part in the five-mile hero assault course at Avenham Park on June 10.
The course is designed by Royal Marine Commandos and Army Engineers of Ozonefit Military Fitness Preston.
To make a donation visit http://www.justgiving.com/teams/Zollie