Genome Research Project Now in our fourth year of supporting Muir Maxwell Trust Clinical fellow Dr Simona Balestrini - please click here for further information. Close notice
Bg Top Edge Bg Bottom Edge
Home > The Trust > Our Beneficiaries

Our Beneficiaries

Oliver Joy's Story

5-year-old Oliver Joy has cerebral palsy and severe epilepsy.

When Oliver’s mum, Francesca, first contacted the Muir Maxwell Trust, she was watching over him every night, petrified in case he had a seizure, was sick and choked in his sleep. Within a week, they had an epilepsy alarm and things looked a little bit brighter.

The Trust also funded a specialist bed for Oliver, with a pressure-relieving mattress. “It has just been amazing,” says Francesca. “Oliver can sleep in it comfortably. It has got guards on the side and looks like a child’s sleigh bed, rather than a hospital bed.”

In what’s proving to be a constant uphill struggle, not only with Oliver’s condition but many of the agencies that are supposed to help, Francesca is finding the MMT a constant source of support.

Read more about Oliver's story

Ben Holmes’s Story

Six-year-old Ben Holmes was recently diagnosed with Lennox Gastaut Syndrome, which as Ben’s mum Jane says is "an umbrella for severe epilepsy that’s really uncontrollable. Drugs don’t really work and it causes development to stagnate and even regress."

From having his first seizure just before his third birthday, Ben now has virtually every type of seizure – tonic-clonics, absences, drops and head nods. The frustrating thing for Jane is that no-one can say why Ben is like he is: "You feel you could do more if you had a diagnosis," says Jane.

An epilepsy alarm provides some practical support, but it’s the fact that the Muir Maxwell Trust is out there doing things that Jane finds most reassuring.

Despite, or perhaps because of, everything that Ben and his family are going through, Jane makes the time to raise money for the Trust through an annual Art Fair and, together with her husband, is running this year’s Edinburgh Marathon.

Read more about Ben's story

Evie Phypers’s Story

Jason and Alex Phypers’ youngest daughter, Evie, is just 14 months old. For eleven of those, she has suffered epileptic seizures of one kind or another, from one-sided fits and jerks to absences and full body tonic-clonics.

Like many epilepsy sufferers, the early talk was of febrile convulsions. But as Evie’s seizures became more frequent and severe, doctors began to suspect Dravet Syndrome.

Jason and Alex were absolutely distraught. "It felt like the world was ending," says Alex. "Thank God for the Muir Maxwell Trust." Like many parents, they had been given this devastating news and then very much left to get on with it. The Trust has provided both emotional support and an understanding of this rare condition.

"They’ve helped immensely," says Alex and "given us some real hope with Evie."

Read more about Evie's story

Amy O’Neill’s Story

11-year-old Amy has had a tough time of it.

At three years old she developed hypoglaecemia and nearly died. Four years later she started having petit mals, which later progressed into tonic-clonic seizures.

Perhaps unusually, Amy was diagnosed with epilepsy quite quickly – it showed up on an EEG (electroencephalogram) – not that it has done her much good.

"Amy’s hypoglaecemia, which affects her liver, means that she can’t be prescribed the most effective drugs for epilepsy," says Amy’s gran, Gwen, who looks after her.

The Muir Maxwell Trust has been able to help with an epilepsy alarm, but even here the odds seem to be stacked against Amy. She is now having the kind of night-time seizures where she’s completely rigid – with no movement to trigger the alarm.

For Amy, there’s no light at the end of the tunnel, just yet.

Read more about Amy's story

James McInnes’s Story

Two-year-old James McInnes was born four weeks premature. A routine ultrasound scan led to an MRI which revealed that his brain is a lot smoother than it should be. But it wasn’t until doctors actually saw James having a seizure that they diagnosed him with epilepsy.

Since then, James has suffered from a number of different seizure types and tried a variety of different medications. The Muir Maxwell Trust has provided him with an epilepsy alarm, which as James’s mother Marisa says "has never gone off". Despite that, it provides enormous reassurance.

"You know that if anything does happen, it will go off. It does make you feel a lot better knowing that it’s there," says Marisa.

Read more about James's story

Jenna Hunter’s Story

Five-year-old Jenna had her first seizure when she was just seven months old, but it wasn’t until she was three-and-a-half that she was finally diagnosed with Dravet Syndrome – all thanks to the DNA Sequencer purchased for Yorkhill Children’s Hospital in Glasgow by the Muir Maxwell Trust.

Since being diagnosed with Dravet Syndrome and introduced to Stiripentol, the change has been dramatic. "It’s night and day from when she first had her seizures to what she’s like now," says Jenna’s mum Lynda Anderson. "The daily routine was going to the hospital, dealing with seizures and just constantly taking care of her. But now that she has had her medications changed, it’s totally different. She’s focussed, concentrated, you can take her out and her development is improving."

Thanks, in part, to the impact of DNA testing, Jenna now has a little sister in her life. "We’ve had a baby that we wouldn’t have done otherwise. Both John and I were tested and they found that we didn’t carry the mutation in the gene. So we decided then to have another baby," says Lynda.

Read More about Jenna's story