Benjamin’s RAS Story

As a special needs teacher, Suzanne Walters from Birmingham is accustomed to dealing with a range of distressing medical conditions as well as giving medication and even accompanying pupils to hospital in an ambulance when they’ve been especially ill. But when her own son began having seizures at just 8 weeks old, she was totally devastated. Nothing, she realised can prepare you when it is your own child you are dealing with.

Suzanne has been frightened by the sheer number of attacks her son, Benjamin, has suffered.

They first saw a GP after just two episodes, and was scared she would be dismissed as a paranoid first time mother imagining conditions and illnesses because of her work. She was right to be worried; she was told Benjamin was holding his breath, even though he was only 12 weeks old. She knew this just wasn’t right.

“He would scream loudly and distinctively, go rigid and then jerk before becoming unconscious – how could that be self-inflicted by a 12 week old baby?” she says.

After several attacks in a few days, they were sent to the hospital for ECG heart and EEG brain tests. But it wasn’t until ten months later that they saw a doctor who was an expert in Benjamin’s symptoms. He diagnosed Benjamin as suffering from Reflex Anoxic Seizure, a type of arrhythmia.

Suzanne and her husband struggled to come to terms with the diagnosis, eventually realising that the only way to cope was to keep talking about their worries to each other. Suzanne returned to work, relying on both sets of grandparents to care for Benjamin, but his RAS has affected the whole family, with everyone having to watch him constantly. Suzanne knows though, that she is lucky to have the support of her family so she could take up her job again.

Benjamin is now two years old and is the couple’s pride and joy. He is still having frequent attacks which leave him drained, pale, and with little appetite. They are hoping it will get a bit easier as his speech develops and he can begin to tell us what he is feeling. Despite their anxieties, they try to remain positive:

“RAS, like any condition, has such a major impact on people’s lives but I am a firm believer of finding a light at the end of the tunnel. My husband and I are even closer now we’ve gone through this together and have learnt how to really communicate. I have a completely different understanding at work as I can empathise with parents on an informed basis and offer them support and help. I really know what a struggle it is to cope and deal with hospitals and Doctors and now always offer time if they need to talk.”

 Her employers have understood about needing time off for hospital appointments and she says she has been touched by their kindness:

“Most of all though, we have learnt about attitude. Benjamin is so happy and so loving. When he can’t bear weight, he falls over constantly but tries over and over again to walk to where he is heading – he is one determined little boy. He does get frustrated but is always smiling and so neither of us can feel sorry for him or for ourselves for long. He is not letting RAS get in his way and that has stopped me worrying about his future so much. I know Benjamin will do whatever he sets his mind to regardless of RAS.”

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