Aubrey was born on 26th December 2018.

He was healthy, happy and thriving.

It wasn’t until he was between 9-12 months that we realised he wasn’t meeting ‘normal’ milestones for his age. Health visitors and other professionals tried to reassure us that he would do it when he was ready and he was just ‘being a boy’ taking his time. But we knew something wasn’t right.

After visits to the GP and eventually a paediatrician, his development wasn’t improving so they finally agreed to do some further investigations.

Then, sadly Covid hit, so we waited almost a year for an MRI scan which he finally had in April 2021.

In the meantime we were put in touch with all the services we needed to support Aubrey; speech and language, physio, OT… they supported us in getting Aubrey a bigger push chair, a standing frame for at home, physio equipment and a SALT programme.

We got Aubrey’s results from the MRI in May 2021 which showed Aubrey had a type of Mitochondrial disease (Mito), something we’d never heard of! His community paediatrician who delivered the news also knew very little about Mito and we left the hospital with it written down on a scrap of paper and an appointment to see a neurologist the following week.

In Nov 2021, it was confirmed through blood tests that Aubrey has Leigh syndrome.

As you always do in these situations we googled Mito to find out what we were facing and what kind of life we could expect for Aubrey. We were devastated to discover it was a progressive, life limiting condition with no treatment or cure.

In our search we found the Lily Foundation, the UK’s leading mitochondrial disease charity, we used the information on their website to educate ourselves and our friends and family as well as finding comfort in their family Facebook group. The Lily foundation has supported us in so many ways already. We’ve been lucky enough to go on a funded holiday to Center Parcs, attended 2 Lily family weekends and been emotionally supported by so many Mito families we’ve been put in touch with.

Some friends have already raised money for the Lily Foundation on behalf of Aubrey by running the London marathon, having cake sales, collection tins and more! We would now like to continue fund raising in Aubrey’s name and that’s why we’re setting up team Aubrey!

Aubrey's Mito affects him every day in many ways. He is nonverbal, can’t sit unaided, crawl or walk and has global development delay. It also affects his eating, he has an unsafe swallow and in June 2022, he had a gastrostomy and a button fitted for all fluids. Despite all of this, Aubrey is the happiest boy, making everyone around him smile every day 💙

We really appreciate everyone who has fund raised for Aubrey so far, if you would like to raise money and much needed awareness for The Lily Foundation on behalf of Aubrey please click the start fundraising or donate link.