Our son Jayden was born in 2009 and I knew from a very early stage that something wasn’t right. He was 5lb , needed to be tube fed and struggled to gain weight. He continued to miss / deal milestones.

I expressed concerns and by my GP who presumed I was a worried first time Mother.

At 14months he still didn’t walk and was referred into the system. From then he had a misdiagnosis on a number of occasions.

At 2 he went to nursery and they agreed with me and Jayden did get more support.

However when he went to primary school we struggled with different teachers and because of the nature of his complex symptoms we often felt not believed there was anything wrong with him. We had doors closed in our faces and this slowed down Jayden's treatment and diagnosis.

Thankfully he was referred to a top neuro disability team and genetics at the Centre For Life in Newcastle and they could see what I had been saying all along. Jayden’s high school has also been fantastic and given him the best support.

Sadly over the last couple of years more symptoms have started to develop which have lead to a recent diagnosis of mitochondrial disease specifically NARP and he is not under the Newcastle mitochondrial team.

He waited for almost 14 years for a diagnosis and this was not what we all expected.

As soon as I started reading information on the Lily foundation website we felt relief that we had somewhere to belong and be supported as parents of a child who is fighting the unknown.

We have fought for years to get Jayden a diagnosis and we don’t know what to do with that fighting energy now so........... we want to help to fundraise to give something back to diagnosis, support, to raise awareness and ultimately help the lily foundation with their goal of finding a cure.

Please if you can donate or create you own fundraising page and take on your own challenge. You will find lots of ideas on The Lily Foundation Website.

Thank you

From

Brendan, Louise, Jayden & Fia