In today's podcast episode, I’m speaking to Helen Simmonds, Vice Chair of Reverse Rett and mother to Lauren who is 14 and her younger brother William.

I met Helen all the way back in 2011 when Lauren had just been diagnosed. Helen was die-hard Reverse Rett from the get go, willing to do anything she could to help make change happen for our children. 

From the beginning of her family’s journey through the many ups and downs this debilitating condition has led them through, Helen’s dedication to making things better for Lauren, both in the here and now and for the future, has never wavered. Helen is not naturally outspoken but she doesn’t shy away from doing things the hard way, if that’s what it takes to get Lauren what she needs, whether that be communication technology, appropriate adaptations, schooling, surgeries or the clinical care to keep her well. 

Throughout this conversation and in the time I’ve known Helen, I’ve found her to be strong and clear-headed, determined and persistent with much hard wrought insight and experience to share with Rett families old and new. 

In this conversation, we talk about managing the last year with Covid, Scoliosis surgery (don’t let that put you off) ‘being that mother’ vs becoming a true advocate for your child, when to say ‘no’ or ‘get someone else please,’ the difficulties of coping with two very young children and a new diagnosis at the same time and much more.

As always, we’d love to know what you think and if you found the episode helpful. Please email rachael@reverserett.org.uk or message us on any of the socials @reverserett