Robin

When Emma Allum was 25-weeks pregnant, her unborn son, Robin, suffered a stroke in the womb. Robin is believed to be the youngest ever stroke survivor in the country.

Emma and her husband Dave, of Arnold, didn’t know if Robin would survive birth at 37 weeks. They had planned for every outcome. They had planned his funeral.

“After months of weekly scans, test after test and never knowing if Robin was still alive each week, Robin was born screaming at how unhappy he was to be disturbed from his warm bed and sleep, something that upsets him even today,” said Dave. “But he had made it.”

Devastatingly, the stroke had destroyed Robin’s Corpus Callosum, the middle part of his brain which joins the two sides together and supports many neurological connections.

Robin, who is now six, has significant and complex needs including cerebral palsy and epilepsy. Robin is also unable to swallow leading to extreme respiratory fragility, and he can’t sit, stand, walk or talk.

Despite this, Robin is very alert and aware of his surroundings. He loves music, travelling, being outside in nature and taking part in family activities. “We really have no idea how long we will be with him for, so we try to make every day his best day and ensure he lives his best life,” said Emma. “We were told that doctors believed he was the youngest stroke survivor in the country.”

Robin needs round the clock care and sometimes, he just stops breathing. One of the only times his parents can sleep, is when Robin is at Rainbows.
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“When he is in the hospice, we get a break: the chance to sleep in the parent’s accommodation knowing he is cared for and safe,” said Emma. “The chance to spend quality time with his older brother, doing things we can’t always do when Robin is with us. We get a chance to recharge the batteries to be ready to look after him for the next few months.

“For Robin, it also means he gets to have the best time of his life. He gets to do his favourite things like music therapy sessions. he gets to spend time in the sensory room, he gets to see other children without people staring at him, he gets to spend time watching his favourite programmes and just generally live his best life.

“Rainbows also provides support to us when we are in hospital. The dedicated team working in the wards will come round and check in on us during stays, asking us if we need anything and offering to help support with any problems we may have. It might seem a small thing but, on those days, when we are stuck in hospital, a friendly face that comes to say hello with a cheery smile can make a huge difference.

“We are also able to have support in the home from Rainbows. One of the few things that makes connections in Robin’s brain is music. Robin absolutely adores Rosie, a Rainbows Music Therapist, and a visit from her is the best thing ever for him.”

This summer Robin spent several months bed bound following complications from a routine operation “For an active little boy this was difficult for both him and us,” said Emma. “But the regular visits from Rosie made a huge difference to his day and helped us all have a short time where the boredom of staring at the ceiling was forgotten about.

“Our story is not unique, there are many families like us who need the short breaks and community support that Rainbows offers. Without Rainbows, we lose a lifeline to getting a break. They help us recharge the batteries and be ready to continue the daily battles with various bodies to get Robin the things he needs to survive and thrive.

“Rainbows makes all the difference and allows us to keep going during the dark days and we hope people will support them to help families like ours.”

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