I’m Kerry from Portsmouth, I was lucky to have a beautiful blue eyed baby girl called Ellena May born August 2011, she loved blowing raspberries at everyone and making people laugh. I am now an angel mum as she grew her wings in June 2012. I work in the third sector and have about ten years’ experience of working and volunteering for different charities. I’m very excited to be part of this team of amazing parents who are supporting each other and fighting against all the PBD Zellweger Spectrum Syndromes.
Hi, I’m Tash. I live in Somerset with my husband and our three children.
Our 18 year old son Cam has Peroxisomal Disorder (Zellweger Spectrum) and has defied many of the odds thrown at him. We consider ourselves extremely lucky to still have him with us at 18, but as any parent dealing with a terminal condition, we fear for his future and we struggle to battle the difficulties life already throws at him. I hope and pray to see an end to Zellweger Spectrum Disorder, and until then we will plug on and fight as hard as we can to see that happen.
I’m Carly from Wiltshire, myself and my husband Aubrey have 2 beautiful boy’s Kian & Isaac. Since meeting other families at our first UK meet up we have been determined to get Zellweger UK up and running to support our children & other families. Our boy’s have the biggest personalities and everyone falls for their cheeky sense of humours. Life can be a whirlwind at times but having the support from other families makes hard times that bit easier 🙂 I’m looking forward to being part of this amazing team.
Hi, I am Diane 🙂 for so long I was known as ‘Millies Mummy’ that was my identity, as was my husband Pauls, ‘Millies Daddy’. I live in Scotland.
Myself and my husband Paul are struggling to find our new ‘identity’ and where we fit in this world, so I am hoping that with this exciting new venture of helping to get this amazing UK Charity up and running will not only help us find a place in the world again, but it means that we get to help build a legacy for our amazing kids who have fought and those who are still fighting this terrifying illness. I am excited, ready and willing to help in any way I possibly can and I hope to be a strong reliable member of this amazing team! So, Bring it on! Love you all! X
I’m Stephen, 37yrs young, married to Sarah. We have 3 energetic boys Sean (5) & twins Liam and Donagh (4). Liam has PBD which doesn’t stop him from being the most loveable rogue (Irish saying for a charmer). He has everyone in his life wrapped around his little finger. My hobbies include motor rallying, GAA & soccer, I have been known to have the occasional pint of Guinness and can perform a mean air guitar after such pints! Looking forward to helping out in our next family meet up.