<div>Our little boy, Rory, is only 2 years old. He has acquired epilepsy after suffering a stroke at birth, his seizures began in July 2025 and we received his diagnosis in August. Everything has happened incredibly quickly - and his epilepsy has progressed just as fast.
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<div>Rory also lives with hemiplegia (cerebral palsy) because of his stroke, affecting one side of his body. Each significant seizure makes his hemiplegia temporarily worse, impacting his walking, balance, and the use of his hand. Seeing him struggle after each episode is heartbreaking, and it shows how urgently his seizures need to be detected and managed.
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<div>Since August, Rory has been on epilepsy medication, and we’ve followed every step of his treatment plan. But despite everyone’s best efforts, his seizures have only worsened.
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<div>He now has seizures daily, especially when he is tired, during nap time, and when waking up. He often seizes at nursery, which means James’s and my work are being interrupted regularly as we rush to collect him or take him for medical care. It’s a constant worry, and we’re trying our very best to keep him safe.
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<div>Yesterday Rory had a seizure at nursery that lasted 35 minutes, he was taken to hospital where he had another seizure that developed into a full tonic clonic episode - the most frightening moment of our lives. He had to be given a second dose of emergency medication and oxygen.
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<div>Because things have escalated so suddenly, and because he is so little, we’ve been advised that close monitoring is essential, especially at night and during naps when seizures are harder to detect. After speaking with other parents of children with epilepsy, we have chosen the SAMI-3 video epilepsy monitor, which comes highly recommended for its reliability and ability to alert us immediately if Rory has a seizure.
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<div>We are also in contact with an epilepsy charity who we hope will be able to provide us with an sats (oxygen saturation) monitor, which would be an additional layer of safety for Rory.
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<div>However, the SAMI-3 monitor, which is our most urgent need, costs £1206 — more than we can manage alone — but it would make an enormous difference to Rory’s safety and our peace of mind.
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<div>We completely understand that it’s very close to Christmas, a time when everyone is already stretched. We have no expectations at all. If you are able to contribute, even the smallest amount, we would be deeply grateful -  but your kind thoughts and support mean just as much to us.
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<div>Thank you for reading, for caring, and for supporting our little boy.
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<div>Your kindness brings us one step closer to giving Rory the safety he needs.
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<div>Please note that we have accounted for the fundraising fees in our goal total.
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Urgent Support for Rory’s Epilepsy Monitoring

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