Rudy’s story: “We knew we were in very safe, and expert hands”.

Children’s hospices provide vital support for children and young people with a life-limiting or life-threatening condition. Everything they do is #ForTheChildren – helping families make the most of their lives together, no matter how short.

This Children’s Hospice Week we are showing how important each individual child is to the amazing local hospices who care for them. They provide a lifeline #ForTheChildren like Rudy.

“Rudy was born in March 2020. We knew things weren’t quite right with how Rudy was developing and then, from around eight weeks old, he started to have obvious seizures and would scream and cry every time he woke up. Rudy was diagnosed with epilepsy, then after a three-month worrying wait for more test results, he was matched to have the genetic condition MCAHS-1.” explains Rudy’s mum Nicola.

“When we got Rudy’s diagnosis, our local hospice Haven House welcomed us in. Harry and I had gone from fundraisers to new parents, who needed this very special type of support.”

Rudy is two years old, and he cannot sit up or hold his own head, much like a new-born. Rudy takes several medications every day for his epilepsy, and they will be for life. He has most of his food and all his daily medications via his NG tube as his swallow isn’t entirely safe.

Nicola continued: “Despite all this, he is the happiest, smiley little boy and our family and Haven House are working all the time to strengthen him and fulfil him to the best of his ability, whatever that may be. When we first came to Haven House they gave us some sensory toys for Rudy and explained about the classes and therapies he would be able to access. They just got it. We knew we were in very safe, and expert hands.”

A misconception is often that, because of the word “hospice”, Haven House is a place where children go to live out their last days. This of course does happen sadly, but there is also a lot of the opposite: hospices help children to live, everything they do is for the children.

Nicola added: “The hospice also supports Rudy through physiotherapy, yoga, music therapy and respite care. Rudy lives life! He goes to classes, he hears live music, he moves his body with physio and hydrotherapy, and yoga. He can spin on a roundabout like any other child, in their fully accessible playground. He even has sleepovers at the hospice where he is cared for by experienced nurses, so that we can have a proper night off and recharge.”

“Rudy’s hospice is a very special place and invaluable to our family and so many others.”

Children’s hospices like Havens House provide vital support for children and young people with a life-limiting or life-threatening condition. Show your support #ForTheChildren this #ChildrensHospiceWeek.