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Nadia’s story: “I never expected to have to use a children’s hospice. Twice”

“We never in a million years expected to be a family that needed to use a children’s hospice. No family imagines it will be them. But it was us. It is us. Twice over.

Total shock

“Our son Zayn was born in 2012 and he was perfect. He was my third child. But at one month old he started to look very jaundice. This soon escalated and at three months old he was diagnosed with Niemann Pick disease – a rare progressive genetic disorder. I will never be able to describe to you the shock when you hear this news.

“Zayn’s illness progressed pretty rapidly and he was soon fed through a tube due to an unsafe swallow, and eventually relied on oxygen. He was also incontinent, and couldn’t walk, and very sadly developed childhood dementia – very typical of his illness. Everything just felt so, so cruel.

Somewhere we knew we needed to be

“Our medical team suggested that we go and visit our local hospice, Helen & Douglas House. We were nervous at the beginning. Why did we need a hospice? But we decided to give it a chance and go for a visit. I am so glad we did. As soon as we arrived, we knew it was a place where we wanted to spend time, a place where Zayn would be happy and comfortable. They welcomed the whole family into their arms. It was warm and bright and lovely.

“We used so many of their wonderful services during Zayn’s life including much-needed respite breaks, symptom management stays, step down discharge from hospital, sibling support and sadly, eventually, bereavement support.

“Our lovely boy passed away in April 2017 when he was just 4.5 years old after a five-week stay in the hospice. We were able to stay on-site with him, so we were always at his side. Which was a true gift. Eventually, he died at home with me by his side. Despite so much sadness, we were sad to leave the friends we had made at Helen & Douglas House. But I was about to have another baby and there was no time to slow down.

Along comes Rayyan

“Just three months later my next child was born and we called him Rayyan. Thankfully his test for Niemann Pick disease came back negative, a huge relief to the whole family. But at just eight weeks old he started twitching which soon developed into huge seizures. Devastatingly Rayyan was also diagnosed with a life-limiting condition. Almost like history repeating itself. We relived the same devastation that we had felt with Zayn, how could this be happening to us again?

“Once again we were referred back to the hospice where we knew we would have the very best care waiting for us. Helen & Douglas House welcomed us back into their arms.

“Caring for Rayyan is a 24/7 job and this has been very hard over the last few years. He has prolonged seizures, is non-verbal and non-mobile. Like his brother he is also fed through a tube. He has an extremely low immune system and so we spend a lot of time in and out of hospital. By an awful twist of fate, he was diagnosed with Covid19, despite doing so much to protect him at all times. Thankfully though he recovered well from this illness.

“Again we have used Helen & Douglas House for respite stays and emergency breaks when his seizures become too difficult for us to manage at home. We stay in their lovely parent accommodation, so we are always with him. Even though we know he is in really safe hands.

“Caring for Rayyan has been extremely difficult during the pandemic, shielding at home for months on end often with no end in sight. I am awake all day caring, and all night, flushing his pump and feeding through his tube, turning him and making sure he’s comfortable. I am not able to work and care full time for my son. It’s exhausting at times and there’s always guilt that I am not able to spend as much time with my other children as I would like. I am always tired and every night is another night of broken sleep. But when I sit and watch my older children singing and reading to Rayyan, I feel blessed. I will always be grateful for my children, and for the ongoing, dedicated care of the wonderful team at the very special place we call our hospice, Helen & Douglas House.”

Christmas when you are bereaved and caring

We celebrate Christmas with family, probably not in a traditional way, but we have a tree, presents and a big Christmas dinner. For us, Christmas means spending time with family and making memories – but it’s also a bittersweet time as Zayn is missing every year. Christmas is always a hard time when you have lost someone, especially a child, but we try our best to make it special for the children – especially Rayyan. He can’t physically open presents or eat (his dinner will be blended) but he’s spoilt by the family and we have a lovely time together. It’s about making memories, being happy and truly thankful.

Family stories