Carers' Week 2022

Ralph and Freddie's story:

Ralph looks like any other four-year-old. He’s happy, fearless and he loves to play. Behind his confident character lies a very rare, very aggressive invisible condition that is slowly taking away his abilities.

Ralph has a gene mutation called Dravet Syndrome. His condition is a degenerative one, meaning his brain capacity will deteriorate as he gets older and he will end up with severe learning difficulties and worsening mobility.

His mum, Hayley, described how she learned her youngest son would face an unbelievable battle in his first few months. “Ralph was a difficult baby from day one, the complete opposite to his big brother Freddie,” she explained. “Everyone always used to say ‘it’s second child syndrome, you never get two easy ones.”

Hayley’s mother’s instinct knew Ralph was more than just unsettled, and when he was seven months old, Ralph suffered his first severe seizure – the first sign something was very wrong. At the hospital, tests showed no abnormalities, though Ralph continued to suffer severe seizures that were impossible to control without sedating him, leaving him unconscious for days. He would often stop breathing, which led to him being intubated in intensive care.

Sometimes, Ralph will be aware when a seizure is coming and he will try to run away from the feeling of it, not remembering when he’s had a seizure, causing him confusion. Hayley said, “He just wakes up and he suddenly can’t walk or he just hurts and doesn’t know why. He has to learn all his skills again.”

If Ralph has a seizure around his brother, Freddie will lay down on the floor beside him to comfort Ralph by holding his hand and stroking his face, sometimes even bringing him back to consciousness with the sound of his voice. “They’re very close to each other and Freddie is very protective of his little brother,” Hayley told us. “By the age of four Freddie had learned what to do with the medication and he’d know exactly how to save Ralph’s life if he needed to.”

A few months after Ralph’s diagnosis, a colleague of Ralph’s grandmother recommended Demelza and suggested Hayley get in touch.” Straight away I thought ‘we don’t need a hospice – it’s not the end!’,” Hayley said. “Luckily she reassured me that Demelza wasn’t like I first thought and so I did a self-referral. Watching Ralph play at Demelza just gives you a new perspective, it makes you think ‘If a child like him can be this happy, what have any of us got to be miserable about?’”

Ralph will turn five this summer. He started a local special needs’ school in September last year, just five minutes from home, and is thoroughly enjoying going to school.

“Ralph does three hours a day in the morning and absolutely loves it! Any longer is too much as the tiredness means he has more seizures but we’re hoping he can start to go longer and stay for lunch”.

“Those three hours give me time to repair the chaos that follows Ralph around! And do those everyday things you need to do – washing, food shopping, just catching up with life!”

Freddie is now seven and loving life in year two. Hayley says: “School is like a respite for Freddie, time away from home to just be himself and not having the worry of caring for Ralph”.

Fundraising for Demelza

Life can be chaotic –but the support given by Demelza is a lifeline to the family, support that has inspired them all to take part in fundraising events. Last year, Freddie raised a staggering £1801.00 and topped the Demelza fundraising leader board taking part in the Miles in May challenge. And this year, Ralph will be centre stage – Freddie by his side -  taking part in Little Warrior, an accessible challenge event for all the family.