Derby mum set to launch charity in memory of her son

A Mickleover mum has announced she is launching a charity named Sam’s Superheroes in memory of her five-year-old son who died following a series of seizures caused by the sudden onset of an epilepsy syndrome so rare it affects just one in a million people.

Rachel Liew’s son Sam was a healthy child when he developed Febrile Infection Related Epilepsy Syndrome (FIRES) believed to be an exceptionally rare reaction to a run of the mill virus such as a cold or flu.

Despite no history of seizures, the Silverhill Primary School pupil was rushed to hospital in March after experiencing the first of a series of increasingly debilitating and ultimately catastrophic fits.

His distraught parents watched on helplessly as neurologists at Nottingham’s Queen’s Medical Centre fought to stop the seizures, which were not responding to any of the standard medication.

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Despite their best efforts and input from experts around the world, just seven weeks later Sam died in his parent’s arms, while his heartbroken mum sang her son their special song.

Now Rachel wants to create a lasting legacy for Sam by setting up a charity in his name which will raise awareness of Childhood FIRES and fund activities based around his love of animals, nature and the outdoors.

She said: “When Sam took his last breath, our world and lives shattered into a million pieces all around us.

“We were plunged into a world of overwhelming grief, emptiness, numbness, desperation, and heart-wrenching pain as we realised we would never again see our beautiful son, or hear his joyful voice, his laugh and his giggles.

“We would never again hear him call us mummy and daddy, or feel his loving kisses and hugs, or see him write I love you in a card, just because he felt like doing it.

“Someone told me that grief is love that has nowhere to go and it’s absolutely true. My heart is filled with love for my precious little boy and I need to do something positive with it.”

When Sam had his first seizure Rachel immediately rang 999 and 30 minutes later, when the fitting had stopped, they were taken by ambulance to the Royal Derby Hospital.

He was admitted to the high dependency unit where he continued to have further seizures and was placed into an induced coma and onto a ventilator.

The following day Sam was transferred to Nottingham by the Children’s Medical Emergency Transport team, who took around six hours to prepare Sam for the journey to the Paediatric Critical Care Unit (PCCU).

“When Sam was ready for transfer, it was like an out of body experience to see my beautiful boy surrounded with drips and electronic equipment to keep him alive,” said Rachel.

“As we entered the alien world of PCCU it was terrifying because we had no idea what to expect or what lay before us.

“In the first couple of days there was a whirlwind of activity around Sam. There was a constant team of people making up new medications, which would initially work, but then his brain would find a way round them and he would start to seize again. It was devastating.”

Rachel and Jim, Sam’s dad, were soon told that their son had an exceptionally rare condition called New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection Related Epilepsy Syndrome (FIRES).

They were given a printout from the Rare Disease Organisation explaining that Sam had a one in a million chance of developing the condition and that it was extremely challenging to treat.

Over the coming weeks, Sam was given numerous medications and treatments, including specially authorised visits from his beloved dog Daisy and less conventional treatments.

The team of neurologists and paediatric critical care team fought a huge wrath of complications, both from his medications and his seizures, including brain swelling and pneumonia.

As the days turned into weeks hope began to fade that a cure could be found.

“The entire clinical team at Nottingham were just fantastic. It really was a team effort, from the PCCU consultants, registrars, doctors and nurses, through to the neurology consultants, and the simply fabulous physiotherapy team,” said Rachel.

During his stay in hospital, Sam had four MRI scans which showed the legions – or damage – to his brain. After the first scan Sam’s parents were told he would have significant disabilities if he survived. But the results of his final scan were unbearable.

“It was life shattering – his brain damage had evolved and was catastrophic. It was everywhere, in the middle of his brain, around the outside. It was likened to having super-fast dementia leaving holes all over his brain,” Rachel said.

“All hope of Sam recovering was blasted away. The FIRES had simply eaten away at his brain and we felt that it wouldn’t stop until there was nothing left of it.”

A decision was made by the medical teams that Sam’s breathing tube, which was maintaining an airway for him, would be removed to allow Sam to make his own decision on whether he could survive or not.

His parents made the heart-wrenching decision to agree as there were simply no other treatments left to try.

For 90 minutes Sam clung to life but, while his brain could trigger a breath, it could no longer sustain his life and he slowly slipped away.

“Sam adored superheroes, and in the last seven weeks of his life he was stronger and braver than any cartoon character. He was a real-life superhero and to say we were proud of him would be an absolute understatement,” said Rachel.

“Having to watch, powerless, for seven weeks our previously healthy son fight this horrific and catastrophic condition, was complete and utter torture. If love alone could have healed Sam, then he would still be alive today. Our hearts and world were shattered beyond comprehension.

“But I can keep Sam’s memory alive and create a lasting legacy in his name. We are registering the charity name Sam’s Superheroes and intend to raise money to support initiatives and experiences that have all the things that were important to Sam at their heart.

“He was a kind and caring little boy, who loved his family, animals and nature so everything we do will be around these values. We want to sponsor projects that support outside play, wildlife and animal assisted therapy and we’re starting with a sensory garden at Sam’s school.

“Our first event will be a Christmas carol concert in Mickleover and we’re also supporting Derby’s Secret Santa.

“It’s also vital that we raise awareness of Childhood FIRES and I am talking to the NORSE Institute in America to explore potential opportunities to support this.”

Since Sam’s death Rachel has trained his dog Daisy to become a therapy dog and she intends to make Daisy available to the community.

“Even if one child or family is helped by Sam’s Superheroes it becomes a force for change and allows for greater good to be spread in the community around us.

“We are just starting out on this legacy journey, but any support is greatly appreciated and I know we will make a difference for families and children in Sam’s name – the most precious little boy in the world.”

To find out more about Sam’s Superheroes visit where there is also information about FIRES and NORES as well as links to specific organisations.

To make a donation visit Crowdfunding to creation of an ever-lasting legacy for our darling boy to support families, children, animals & nature. #Samssuperheroes, #love2sam; on JustGiving.

See our gallery of pictures of the family below.

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Courtesy of Derbyshire Live – Derby News