**UPDATE**

On Tuesday 22nd August 2023, Rosa's parents – Charlotte and Richard – finally received a diagnosis for their sweet girl.

Rosa has been diagnosed with Bpan, which is short for Beta-propeller. This is a genetic protein associated disorder, where the gene has mutated. This does mean Charlotte and Richard aren’t carriers, it has just been sheer bad luck as there are only 500 cases diagnosed in the world.

As we know and see in Rosa already it comes with early onset epilepsy, vision problems, and global development delay, which is caused from the build up of iron in the brain.

The scariest part is that it also causes early onset Parkinson’s and Dementia in teenage years, which will lead to Rosa being wheelchair-bound and, as her swallowing and feeding decreases, she may need to be PEG fed.

It’s been a very mixed week of emotions, and as much as Charlotte and Richard feel grateful to finally have a diagnosis, they now have to come to terms with the its impacts and make a plan for the future.

This makes my fundraising for Ryedale Special Families even more important, as Rosa will definitely need their fantastic support going forward.

Thank you to all of you who have sponsored my efforts so far, and to those of you who will continue the support as I arrive at the final stages of my challenge.

…….

Six months ago, when I set out to run a marathon every month for a year, I’ll admit I wasn’t exactly sure how far I’d get before it got too much. 

But here I am, halfway through the challenge of a lifetime and feeling stronger and more in tune with my body than ever. There have been tough stretches, of course, but I’m quickly reminded of the causes I’m doing this for – and that those moments of pain or isolation I might experience out on the tarmac are barely a fraction of what those people I’m running for are experiencing.

Having completed my first six marathons for Tommy’s, the baby charity, and hit my £8,000 target, I’m now going to be running for a charity with a similar mission — but one that is closer to home: Ryedale Special Families.

Ryedale Special Families is an independent charity, currently based in Old Malton — just down the road from my own salon. They provide ongoing care and support to over 400 families throughout Ryedale who have children or young adults with disabilities or additional needs.It’s the sort of thing that you can’t really imagine until it happens to you.

You drown under doubts and questions and new demands, and often don’t know who to turn to. The caring, unflappable staff at Ryedale Special Families, and the community they’ve developed — teeming with expertise, wise advice, or sometimes just someone who understands the struggle — is a unique and vital resource for hundreds of families in our area.I’ve seen first-hand the incredible work that Ryedale Special Families does.

 My salon is more than just a place for people to spruce up their looks: it’s become a space where women come to talk, and offload, and figure out what’s next in their lives.

One of my regulars is Charlotte, and her little three-year-old Rosa has had a tough start in life. She’s undiagnosed, but suffers from seizures, has difficulty walking, and hasn’t started to talk yet. The support they’ve both had from Ryedale Special Families has been irreplaceable — and will only grow more important as Rosa continues to grow up (and become even more of a character).

Ryedale Special Families are currently fundraising in order to build brand new premises in Pickering, which will enable them to continue providing their services, and expand them, in a far more functional and appropriate setting.

The money I raise in my trainers will contribute to these efforts.As I set off on the second half of my year-long challenge, I know I’ll need more supporters of my own. So, if you’re able, please do donate to this important cause. I’ll see you at the finish line.