In the spring of 2020, Eberley welcomed her son Jude into the world. What started as a seemingly ordinary pregnancy soon took a heart-wrenching turn.

Eberley recalls, “From about six weeks, I knew something wasn’t right, but because it was Covid, it was really hard to get an appointment anywhere. At about 11 ½ weeks Jude started having seizures, and after getting rushed to the hospital in an ambulance, he was eventually diagnosed with a rare genetic condition. Only 370 children in the world have it, and it affects his muscle tone, vision, and communication.“

Jude’s diagnosis brought with it a profound shift in their daily lives.

Eberley shares, “Day to day life for us is very different; some days are great and others are really hard. Looking after Jude is challenging; there’s lots of things we have to do, like his feeds and medicine, and because he can’t communicate, we have to guess what he’d like to do.“

Sleep is a luxury for Eberley, who cherishes even a few hours of rest. She admits, “If I get 4-5 hours of broken sleep a night, then that’s good for me, don’t ask what I run on because I don’t know!“

Jude’s condition also impacts his older brothers, especially the youngest, who worries deeply for his little brother. Witnessing Jude’s struggle has left a lasting mark on their family.

In January 2022, Jude found solace at Zoe’s Place. Eberley confesses that leaving him for the first time was incredibly difficult. “It was hard at first to leave him, you worry whether anyone will be able to care for him as well as you will, but the hospice really feels like a home away from home. You walk in and feel like it’s safe, and that was the most important thing for our family.“

Over the past year, Jude has thrived at Zoe’s Place. The hydro pool is a particular favourite, offering Jude not just therapy – but moments of pure joy. Eberley beams, “He absolutely loves coming to Zoe’s Place, when he hears the doorbell in the porch, he gets a big smile on his face.“

During a critical period in Jude’s health, the nurses at Zoe’s Place stood by Eberley’s side, offering unwavering support and attending multi-disciplinary meetings. “I realised they actually know my son in the same way that I know him, and when things are deteriorating, they offered their voice along with mine.”

Zoe’s Place also extends its care beyond Jude. Eberley emphasises the impact on the entire family. “When Jude is at Zoe’s Place, I’m able to be an actual mum, rather than a medical mum. I get to spend time with the older boys, which is so needed.”

Siblings of children with complex needs often face their own unique challenges. Zoe’s Place provides them with crucial opportunities for connection and fun, offering a sense of belonging and understanding.

“Without Zoe’s Place, our lives would be very different, they are an extended family to us. It’s just so much more than a hospice to us, so much more.”