“Every day is different and every day is no typical day for us,” said Anita Howell.
The mother-of-two has just recovered from breast cancer. Her husband Simon is waiting for a new kidney.
The couple, who live in Burgess Hill, have two children – Sarah, ten, and James, five. Sarah is a young carer.
Despite the journey they have had, the family are using their experience to help other children learn about kidney disease.
They have written three books aimed at children who have a family member who suffers with the disease.
All books have been written from their daughter Sarah’s point of view and can be bought on Amazon.
We want to make people more aware of the disease. There are three million people in UK with kidney disease and 6,000 people waiting for transplant.Anita Howell
They are also finishing the first draft of a children’s book about breast cancer, which they hope to get published.
Anita said: “When Sarah was two we looked for books to help her understand why daddy couldn’t pick her up anymore.
“It is the way children learn by having stories read to them, but there wasn’t any around.
“The feedback we have had has been phenomenal. We would love to have them in every renal kidney unit in the country, and in shops like Waterstones, and in schools.
“The books are aimed at children but adults can read them too. We have had reviews saying they are really helpful for adults.”
Anita’s husband Simon, a retired doctor who worked across Brighton, Worthing and Chichester, was born with kidney problems.
“He deteriorated dramatically when he was a junior doctor,” said Anita.
“In 2004 he needed a transplant. His mum was a match and donated a kidney to him a year later but it never worked brilliantly and in 2009 it was back in failure and he started waiting for a new kidney again in 2010.
“He had sepsis three times and we nearly lost him which was really scary. He had to retire at aged 34.
“Simon’s health can deteriorate very quickly, he tries to do dialysis when the children are at school so he doesn’t miss time with them.
“We want to make people more aware of the disease. There are three million people in UK with kidney disease and 6,000 people waiting for transplant.”
Anita has just returned to work at Tesco in Burgess Hill.
She has been left with lymphedema since fighting the cancer – a condition of localised fluid retention and tissue swelling caused by a compromised lymphatic system.
“I had my breast cancer diagnosis four days before Christmas in 2016 – it didn’t seem real,” she said.
“I will see how I am doing later this month but the doctors are happy, the chemotherapy worked really well and the cancer has gone.
“We have had phenomenal support from our friends, who have taken me to A&E so an ambulance hasn’t had to be called to scare the children. We have always been honest with the children but we try not to worry them.”
There are two editions of each book, one which is story only and one with notes in the back, aimed at parents and schools.
Their daughter Sarah has also been taking part in sponsored reads to raise money for charity. She has raised almost £5,000.
“I am so proud of her, considering what she has had to go through,” said Anita.
“They are both very kind and compassionate children who are able to think about others despite what they have been going through.”
The books are available to buy on Amazon.