The bright side

Alfie has a rare genetic condition but his mum Laura has decided to focus on the positives rather than the challenges  – and, thanks to a gift from Satan’s Little Helper, there may be more of those to come!

Laura had no idea there was anything wrong with Alfie until he had spasms at five months old.

“I’ve had some tricky moments with very little support but if that’s my only focus, it can be so easy to overlook all the good things that are still happening.

“Alfie is a wonderful kid. He’s so funny, sassy and full of personality. Just because he can’t talk or walk doesn’t mean he’s not valuable as a human or my child. So that’s what I try and focus on.”

Rare disorder

Alfie has an ultra-rare genetic disorder called FOXG1. To Laura’s knowledge, there are only three other children who have it in New Zealand and around 500 worldwide.

The FOXG1 gene is responsible for the early and continued development of the brain. Alfie’s mutation means that he’s completely dependent, non-verbal and non-ambulatory. However, he’s working hard to overcome his communication struggles by using an alternative communication device. He’s also under the care of physiotherapists to improve his movement.

Hitting milestones

“It’s hard to say what he’ll be able to do in the future but, so far, he’s smashing his milestones,” says Laura.”

A big part of Laura’s outlook is to celebrate all the wins in Alfie’s life – and, so far, he’s given her plenty of reasons to do that.

“He’s been seizure-free for a month now, which is something I never thought I’d say. He’s also eating orally and can sit up by himself and crawl, which are all things I was also told he’d never be able to do. I try to focus on what he is doing now and how we can reach the next milestone.”

To help Alfie in continuing to make progress, Satan’s Little Helper sent him a wobble board and foam wedge.

“What a difference they have made!” says Laura. “Just from using the wobble board, he’s built up so much strength that he can sit upright on it without falling over. We’ve also used the wedge a lot to try and get his core and legs strong enough to stand unassisted.”

Satan's Little Helper says small wins are big wins

Building muscle is important for children with FOXG1, who tend to suffer from hip and joint problems, as there isn’t enough muscle to support the joint during movement.

Now, with two vital pieces of equipment available to Alfie and Laura, they will be able to focus on reaching new milestones and giving those who love him more happy moments to focus on.