“Claire House have been a beacon of light in our lives.”
With their daughter, Sauda, seriously ill and no extended family to turn to, hear how Claire House have become a source of unwavering support for dad Aizaz and mum Naznin.
“Our five-year-old daughter Sauda loves to talk, she is very sociable and chatty. She loves anything Disney, in fact she is our own little princess. She’s always singing and dancing to her favourite Moana songs and wants to be a singer when she grows up.
To look at Sauda from the outside you wouldn’t know anything was wrong, but on the inside she has lots of complex medical conditions that affect her heart, brain, gut, muscles and lungs.
When Sauda was born we had recently moved to the UK from India, we didn’t know much about the NHS, we had no family here and no support.
It was in her first days of life that we realised something was not right, we took her to our local hospital and they ran lots of tests. Within a few hours our whole lives changed.
We were transferred to Alder Hey Children’s Hospital and stayed there for two years.
Sauda was diagnosed with complex conditions which mean she can be very sick. She needs numerous medications and has to have oxygen through a tube into her nose to help her breath, she can become tired very quickly and needs an adult to help her do everything.
She has had a lot of challenges in life, having had eight surgeries in five years, but she is a fighter. Despite everything she is faced with, Sauda is always smiling.
At first we didn’t have any support, we spent two years in hospital and then were discharged.
It was the community nurse that told us about Claire House Children’s Hospice and how they could help not just Sauda, but our whole family.
Our eldest son Mohammad was five-years-old when Sauda was born and it was very hard for him.
We spent all of our time in hospital, as we were told Sauda could pass away at any time.
It was challenging, to say the least. Mohammad had to miss school and time with his friends. As parents, it was heart-wrenching for us to see him go through such experiences, and we struggled to explain why these things were happening.
But Claire House have been a beacon of light in our lives. The care and support they have provided has made a world of difference to us all, but especially Mohammed. They’ve helped him to have fun and make memories that he cherishes, like playing golf with other siblings who have sick brothers and sisters. He also had so much fun at the sibling Chocolate Factory event.
As a family, the hospice has had a profound impact on our lives, becoming a second home and a source of unwavering support. With no extended family to rely on, Claire House have become an integral part of our support system. Especially after the birth of our baby last year. We have come to realise just how vital their support is.
At first we weren’t interested in overnight stays at the hospice for Sauda, but after the birth of our son we decided we would try it.
To begin with we didn’t want to leave her as we had never been apart from her, but Claire House built our confidence and know how to take care of all of Sauda’s medical needs.
Sauda loves staying at Claire House, but it’s made the biggest difference to us.
Whilst Sauda is at Claire House, we can spend time together with our sons Mohammad and Zaid and can make plans. It’s really difficult to make plans as Sauda can become suddenly unwell, but when she is at Claire House we have a few days to ourselves.
Recently, we were able to go out to dinner together just the two of us whilst Sauda was at the hospice, which we haven’t been able to do for such a long time, it was so nice.
The care Claire House provide for Sauda goes beyond words. She is given the attention and tailored experiences she needs, making her stay eventful and filled with joy.
Sauda has so much fun, partying in the art room, cooking, baking and drawing and they even arrange princesses to visit when she stays. As parents we can relax knowing that she is receiving the very best care.
Claire House is a lifeline for us. The impact they’ve had on our lives is immeasurable, and we are forever grateful for their unwavering support, care and love.”