A Journey of Support and Memories: Riley’s Story with Emily’s Star

Our Journey with Emily’s Star

Nine years ago, our family registered with Emily’s Star. Riley was only a year old at the time, and the registration process was incredibly easy. Looking back, my only regret is not registering sooner.

Riley has a rare genetic disorder called PURA syndrome, which affects his neurodevelopment. He is also registered blind and lives with epilepsy, among other complex disabilities.

The Support We’ve Received

Emily’s Star has been a cornerstone in Riley’s life for the past nine years. They have been there for us through some of our most challenging moments. From offering emotional and financial support during hospital stays to providing us with countless opportunities to create precious family memories, Emily’s Star has truly been a lifeline.

One of the most treasured memories we hold dear is Christmas 2017. Emily’s Star took us to meet Father Christmas and then to Ice Skating with Elsa and Anna. Watching Riley being whizzed around the rink in his wheelchair by Anna from Frozen, alongside his older brothers, and seeing the joy on their faces, is something I will never forget.

These Christmas days out, organized by Emily’s Star, will always hold a special place in my heart. The memories created on those trips are some of the most precious in Riley’s life.

Unwavering Support Through Difficult Times

The level of support Emily’s Star has given us over the years is beyond words. Even during the pandemic, when life with Riley became particularly isolating, Emily’s Star never wavered. They sent care packages to our door, made themselves available for conversations, and offered guidance and reassurance during one of the most difficult times we’ve faced.

Emily’s Star is made up of the most approachable, empathetic, and warm-hearted people you could ever meet. Their care and support have been a constant source of comfort to us.

Comprehensive Care and Opportunities

There is nothing that Emily’s Star could do that they don’t already do. They offer everything from granting wishes and providing household items free of charge to ensuring that all activities are tailored to suit all ages and abilities. They advise, create opportunities for families to meet and socialise, and most importantly, they care deeply about the siblings as much as the child with the disability.

When you’re registered with Emily’s Star, no family member is forgotten. Everyone feels welcomed, loved, and included.

A Personal Note on Sarah

If there’s one person I can’t imagine life without right now, it’s Sarah. Sarah has been an invaluable support, helping me take Riley to hospital appointments and even accompanying us on days out at football tournaments. As a single parent, knowing that Sarah is available to lend a helping hand when life gets overwhelming means the world to me. Riley loves spending time with Sarah. Her attentiveness to him makes the support she provides feel effortless and easy.

Gratitude to the Emily’s Star Team

We are beyond fortunate to be part of such a wonderful charity. Our hearts are full of gratitude for everything that Katie and her team continue to do for us. We will be forever grateful.