Thanks for taking the time to visit my JustGiving page.

Jaxx is a happy, amazing, beautiful nearly 2 year old little boy that loves Twirly Woos, Mr Tumble and Hey Duggie. He also loves to bite through the corner of my sofa and many other things including my shoulder!! He loves the park and particularly loves the swing (I’m talking a good hour swinging him back & forth!!) He giggles and laughs when you tickle him and boy does he love his food!! He loves to cuddle and we love to cuddle him!! He’s my beautiful, handsome, gorgeous grandson and I couldn’t love him anymore than I already do!!

One thing you will notice however, is that he doesn’t respond to his name, or even if I shouted at the top of my voice that Nannas here!! He doesn’t talk. He doesn’t walk steadily, in fact we call him our little drunken man. He’s always falling over and when he learns a new skill, like a high five (or in his case, it was a low five), you can almost guarantee that a few weeks later he’s forgotten what that was!! He doesn’t really feel pain and that’s a big issue as we never know when he’s hurt himself. He can’t eat “hard” foods or chomp on a packet of crisps because he’s never really been able to chew food properly. Although we have the highest of high hopes that one day he’ll say Mumma or Dadda or Nanna, the reality we have to face is that there’s a high probability he will never talk, He will never go to main stream school and he will ALWAYS need his Mum and Dad to look after him!!

On July 21st we found out that he has Phelan-McDermid Syndrome (PMS). We’d never heard of it before and neither had our consultant in Southampton hospital. It’s an extremely rare chromosome deletion thing!! It’s been a steep learning curve getting to grips with what this will mean for my beautiful daughter Nathalie and son-in-law Pete and their gorgeous son, JAXX.

We continue our quest for information about it, but Jaxx is one of less than 3000 known sufferers of this condition in the world!!! It’s ultra rare!!

I’m running the Brighton marathon in April 2024 but to warm me up for it (never run anything like this before in my life) I‘m running the BASINGSTOKE half marathon on October 1st. I’m running for a reason now!! The wonderful foundation that we’ve found in the U.K. is PMSF.org.uk - they have already provided a lot of information about the syndrome and where to find help. They help fund research too- but charities like these don’t run on air and If at all possible, if you can donate anything to help with their wonderful efforts, please, please do!! I thank you sincerely from the bottom of my heart if there is anything you can give (I know times are hard)!!