“In a moment your whole world can be turned upside down. This is what happened when our two-year-old son Oakley was diagnosed with Angelman syndrome; a complex genetic disorder that primarily affects the nervous system. Oakley was poorly with viruses every couple of weeks and we were in and out of hospital because of frequent seizures. We were given little support and it was frightening."

"Demelza coming into our lives was like a big hug for our family. A hug we needed after a few years of feeling very alone, scared and unsupported. Demelza’s hospice in Kent was the first place Oakley attended where it felt like he could fit in and be safe. For us it was the first place we attended where we felt people understood our struggles and actually really wanted to help and actually could help. It was comforting that the staff are well qualified and are experienced with caring for children with similar medical issues.

"Demelza staff go out of their way to do anything for Oakley we need. Oakley likes Babybels and Nutri-Grain bars and lactose free milk and I was truly shocked when Oakley came for his first day and they had got all of this in the kitchen for him. This wasn't necessary but they had done it to make him feel comfortable and I thought it was so unbelievably kind. They've done this every time he's been since. This may not seem like much to some but after five years of feeling pretty alone, there are no words for how it makes you feel.

"Oakley has many medical issues, including epilepsy, developmental delays, a sleep disorder and decreased muscle tone, known as hypotonia. He is non-verbal and can walk a short distance on a good day but he can't stand up without pulling up on something and he can't stand still in one place on his own. His sleep disorder means he struggles to go to sleep and it can take around two or three hours for him to eventually drift off. Every night he wakes several times; sometimes startling into small seizures and then can't get back to sleep for a few hours. So, his and our sleep is disturbed which is physically and emotionally exhausting for all of us. Often Oakley becomes too tired to attend school and both his dad Jason and I work full time.

How Demelza supports Oakley

"Demelza is the first place we have been to where we’ve been looked after as a whole family – the staff are so kind to us as Oakley’s parents; they are gold dust! They talk to us, listen to our worries and sympathise in a truly empathetic and genuine way. They are the kindest and most caring people I have met - I love them all. But most importantly, they are very well qualified and caring and we know Oakley is in the best hands.

"When Oakley goes to the hospice for day care he likes to use the soft play room. He likes the toys, the sensory panels on the walls and the music sessions. But most of all he likes walking the staff around exploring everything. It’s great for myself and my husband Jason to be able to relax fully, which is much needed. I tend to have a nice long bath and watch a film and catch up on the house chores. My husband can have a long workout which he likes for his own mental health. We often have a nice meal and watch a film or we may go out to a restaurant or the cinema, which is often impossible to do with Oakley.

"Oakley is still getting used to overnight care as he doesn’t like to be away for too long. What he really adores is his home care with Demelza as this is where he feels most comfortable. Oakley is developing anxieties as he is growing up and understanding more (it is a known symptom of his syndrome). These anxieties come out when he goes anywhere other than home, so it’s nice he can relax in a place of familiarity and comfort - especially if he is feeling poorly or tired. Demelza Health Care Assistant Hettie is wonderful with Oakley; they have really bonded. She adapts her play to his energy levels and has a calm temperament which Oakley likes. Hettie is very flexible, reliable, understanding, supportive and listens to my worries.

"Receiving a diagnosis like Oakley’s can happen to anyone at any time and you can feel very alone, helpless and trapped at times. But Demelza helps you keep going when sometimes it feels so hard to. It is overwhelming how daunting it can all feel sometimes. You learn to take each day as it comes, enjoy the small joys in life and you learn to really appreciate what support you can receive.  

"Without Demelza we wouldn't get the much-needed break we need to be the best parents we can be for Oakley. It helps us be less physically and emotionally exhausted and it helps us feel supported through the difficult and worrying times when Oakley is ill and in and out of hospital. With the help of Demelza, we get to see the happier side of Oakley – a giggly and sociable little boy who loves to walk around the garden holding someone’s hand or point to pictures of people smiling.

"We think Demelza is truly wonderful and we are so grateful for the support which is of the highest quality possible. I can't think of a better cause to donate money to.”

- Lisa, mum to Oakley