Welcoming Emma Parker as Reverse Rett’s Family Advocate and Care Navigation Lead

We are delighted to welcome Emma Parker to the Reverse Rett team as our first Family Advocate and Care Navigation Lead.

Families living with Rett syndrome often have to navigate complex and fragmented health, education and social care systems, sometimes at the most difficult points in their lives. Knowing what support is available, who to speak to and how to make sure your child’s needs are heard can be overwhelming, particularly when families are already managing the day-to-day realities of Rett.

Emma’s new role has been created to provide dedicated, one-to-one support to families across the UK. She will help families navigate health, education and social care, understand and access benefits and funding, and advocate for the support they need. From diagnosis and key transitions to periods of crisis or bereavement, Emma will offer practical, compassionate and Rett-informed guidance, helping families feel heard, informed and supported.

Reverse Rett Deputy CEO Andy Stevenson said:

“We’re really pleased  to welcome Emma to the Reverse Rett team. This role has been a long time coming and, for me, it’s about making sure families have someone firmly in their corner when they need it most.

Over the years, we’ve seen just how much families are expected to navigate on top of caring for someone with Rett – health, education, social care, equipment, benefits and the difficult transitions that come as our children grow up. Too often, families are left trying to work all of this out for themselves at a time when they are already carrying so much.

We’ve always done everything we can to help families through those challenges, but having Emma dedicated to this work means we can offer that support in a much more consistent and meaningful way.

Emma brings something incredibly special to the role. She has the professional experience and knowledge to help families navigate complicated systems, but she also understands Rett from the inside. She knows what it means to be a parent fighting for your child because she has lived it herself with her daughter, Daisy.

I know Daisy will be at the heart of everything Emma brings to this role, and I feel very proud that her experience, and everything Emma learned through their life together, will now help other families feel less alone and more supported.”

Emma’s connection to Rett is deeply personal. Her daughter, Daisy, was diagnosed with Rett syndrome at two and a half years old and sadly passed away at the age of 18. Alongside that lived experience, Emma brings extensive professional experience supporting children, young people and families with complex needs.

Emma said:

“I’m delighted to have been appointed as the new Family Advocate and Care Navigation Lead with Reverse Rett.

I’m both a parent of a young person with Rett and a professional with extensive experience supporting individuals and families with complex needs. These experiences have given me a unique understanding of the challenges families face, and I hope to offer empathy, practical support and reassurance to those navigating their own Rett journey.

My daughter, Daisy, was diagnosed with Rett syndrome when she was two and a half years old. Like many families, we experienced many highs and lows over the years until she sadly passed away at the age of 18.

I have firsthand experience of the profound impact Rett can have, not only on parents but on the whole family. If I can use my own experiences to help support others, then I hope it brings meaning to the journey my family has been through.

Professionally, I’ve worked in a community day care setting, within the SEN department of a mainstream high school, and in residential and respite services with Social Services. Although these roles were very different, they all shared one common purpose: supporting children, young people and their families to achieve the best possible outcomes.

I can’t stress enough how important it is for families to have access to someone who truly understands their journey, without judgement or prejudice. I hope this new role will become a valued and meaningful part of the charity, helping to make transitions smoother for young people and their families, and ensuring they feel supported, listened to and never alone at every stage of their journey.”

Emma is looking forward to getting to know families across the Reverse Rett community and is here to listen, offer guidance and help wherever she can.

Whether you’re facing a particular challenge, need help navigating services or support, or simply aren’t sure where to turn next, please don’t hesitate to get in touch. You can contact Emma directly by email at [email protected] or call or text her on 07727 282316. No question or concern is too small, and you don’t have to wait until things become difficult to reach out.