Our Testimonials
Dr Helen Spencer - Consultant - Great Ormond Street Hospital
Jack was the most wonderful boy. When I first met him he was cheeky, full of fun and it was heart breaking to watch him slowly deteriorate and become more unwell from his cystic fibrosis to a point where lung transplant although risky was his only option.
Although Jack knew about the problems that might face him after transplant he remained always optimistic and hopeful for the future. Sadly he lost his battle for life, and it was a battle.
Jack’s wonderful parents Kev and Tina would like to help other children like Jack who are struggling with illness through their charitable work. What an extraordinary tribute to their extraordinary son. I do hope you will support them.
Although Jack knew about the problems that might face him after transplant he remained always optimistic and hopeful for the future. Sadly he lost his battle for life, and it was a battle.
Jack’s wonderful parents Kev and Tina would like to help other children like Jack who are struggling with illness through their charitable work. What an extraordinary tribute to their extraordinary son. I do hope you will support them.
Janice Fauset-Jones & the CF Nurses
Cystic Fibrosis Specialist Practitioner Royal Manchester Children's Hospital
Cystic fibrosis (CF) is a genetic condition. Genes are what make us who we are and how we look and instruct our body’s cells to carry out the jobs needed for our bodies to function. In CF, the gene that controls the movement of salt and water in and out of the body’s cells is faulty (called a mutation) and causes the body to produce thick sticky mucus instead of being thin and watery like it should be. This thick sticky mucus primarily affects the lungs and digestive system in children, but later in life it can affect other parts of the body.
Not all children with CF are affected in the same way - some children can have more severe illness than others. Different mutations respond differently to treatment, but generally children and adults with CF face a daily burden of treatment that involves taking lots of medication and having chest physiotherapy. Due to advances in treatment and medication, life expectancy in CF has increased massively and most young people transfer to adult services and have a good quality of life. However, occasionally, some children who are more unwell with their CF may go on to need a lung transplant.
Jack transferred to Manchester for his CF care when he was 3 years old. He was quite the character - full of energy and very entertaining. Over the years we got to know him and his family very well and he spent long periods of time in hospital. He overcame a huge fear of needles and was extremely brave thanks to our excellent nursing and play team. He loved games, lego, minecraft, and being very mischievous on the ward! During the last year of his life, following his lung transplant, his family worked tirelessly, giving him all his intravenous medication at home so that he could maintain his quality of life and some normality through attending school. They juggled Jack’s massive treatment burden with looking after his sister, attending work and many, many frequent long trips to hospital. Sadly, despite his long battle, Jack passed away just before Christmas, 2016. The fact that his amazing parents are setting up this foundation to help other bereaved families is a wonderful memorial to Jack and will be an extremely valuable resource for families facing similar difficulties. We will always have very special fond memories of little Jack and his family.
Not all children with CF are affected in the same way - some children can have more severe illness than others. Different mutations respond differently to treatment, but generally children and adults with CF face a daily burden of treatment that involves taking lots of medication and having chest physiotherapy. Due to advances in treatment and medication, life expectancy in CF has increased massively and most young people transfer to adult services and have a good quality of life. However, occasionally, some children who are more unwell with their CF may go on to need a lung transplant.
Jack transferred to Manchester for his CF care when he was 3 years old. He was quite the character - full of energy and very entertaining. Over the years we got to know him and his family very well and he spent long periods of time in hospital. He overcame a huge fear of needles and was extremely brave thanks to our excellent nursing and play team. He loved games, lego, minecraft, and being very mischievous on the ward! During the last year of his life, following his lung transplant, his family worked tirelessly, giving him all his intravenous medication at home so that he could maintain his quality of life and some normality through attending school. They juggled Jack’s massive treatment burden with looking after his sister, attending work and many, many frequent long trips to hospital. Sadly, despite his long battle, Jack passed away just before Christmas, 2016. The fact that his amazing parents are setting up this foundation to help other bereaved families is a wonderful memorial to Jack and will be an extremely valuable resource for families facing similar difficulties. We will always have very special fond memories of little Jack and his family.