The Detheridge Family

Meet Tommy and Bobby

Tommy Detheridge is five years old, full of joy, mischief, and an infectious love for life. He knows what he wants, he knows how to get it, and he has absolutely no shortage of charm. Monster trucks, fire engines, Miss Rachel, bubbles, nursery rhymes... and mayonnaise. Lots of mayonnaise. He gets so excited for the school bus in the morning that he stands at the door waiting, calling out for it before it's even turned the corner.

Little brother, Bobby, is 16 months old and, by all accounts, following closely in his big brother's footsteps. The cheekiness is already developing. And while similar to his brother in many ways, his own distinct personality is beginning to shine. 

Both boys are sensory seekers who love music, movement, and spinning things. And both are deeply, beautifully social... Tommy, in particular, will walk straight up to someone he's never met, say hello, and try to give them a hug. He has never met a stranger.

Their Story

Tommy's early signs: constipation, acid reflux, and low muscle tone were easy to brush off as common. It wasn't until seizures began at 11 months that the picture became clearer, and Jennifer started connecting the dots. A KCNH1 diagnosis came in July 2023, when Tommy was two years old.

When Bobby was born, Jennifer and Scott had been told the odds of having another child with KCNH1 were less than 2%. Bobby was tested at six weeks old... and the call came when he was three months. Two boys. Same diagnosis. Same fierce, unconditional love from their parents.

Life with Tommy and Bobby

Routine is everything. During school term, the Detheridge family has a rhythm that works beautifully. Tommy adores his specialist school, knows the staff by name, and lights up for every single bus ride. It is, Jennifer says, like winning the lottery... and it was a fight to get him accepted, right to the edge of a tribunal before the local authority finally conceded.

During school holidays, as it happened to be when we chatted, the juggle is real. Each boy needs one-to-one attention, and like any big brother, Tommy has recently discovered how to get a rise out of Bobby. Jennifer and Scott just take it in stride, recognizing it for what it is... a little boy trying to connect in the only way he currently knows how. If their boys have given them one unexpected gift above all others, it's patience... the deep, hard-won, beautiful kind.

Priceless Moments

At bedtime, the parents divide and conquer. And sometimes, passing in the hallway, Tommy will wander into Bobby's room and whisper... "Night, Bobby." Or he'll pass his comfort bear through the cot slats, as if to say, here, have this.

Or the time Scott made a silly noise in the car. Both boys dissolved into laughter, a full half hour of it, back and forth between them. Jennifer said it caught her completely off guard... and reminded her, in the way those moments do, that they really, truly love each other.

What Their Boys Are Teaching Them

Patience. Advocacy. Gratitude for the small things. Jennifer describes herself as someone who has always been willing to speak up... but her boys have taken that to a new level entirely. When it's your child's quality of life on the line, you find reserves you didn't know you had.

She also speaks of having more empathy now... and less patience for things that don't matter. All of their energy goes to the boys. There isn't much left over for anything else, and they wouldn't have it any other way.

Their Village

The long-term support they have built has been deeply valued. A wonderful pediatrician who listened, advocated, and diagnosed Tommy with autism ahead of a four-year waiting list. A nursery manager who went above and beyond. And Tommy's specialist school, which has woven therapies and learning into every part of his day so that Jennifer no longer has to fight for each appointment on her own.

Finding people who truly get it and fight alongside them has made all the difference.

What This Community Means

Jennifer spoke about the KCNH1 community the way so many families do... as something that is hard to put into words. In a day-to-day life that can feel very isolating, connecting with families who just get it without explanation is like a lifeline. She described it beautifully... like your mum has introduced you to a long-lost cousin. An instant belonging.

She spoke with Michelle the same night Tommy was diagnosed. She reached out to other families in those early days and found an immediate sense of understanding. The family met Ria and Travis, who now live just twenty minutes away. They found Vicky and Ethan. One by one, building a community that feels like family.

Hopes for the Future

Jennifer and Scott’s hopes for Tommy and Bobby are simple and deeply meaningful at the same time. To live as independently, as happily, and as fulfilled a life as possible. Whatever that looks like for them.

"Our hopes are the same as any parent's. Ours will just look a little different."