“Life with Bartter syndrome has been incredibly difficult for us both.”
"My daughter Rumer is nine, but she has never slept over anywhere. She needs to know I am nearby at all times. She doesn’t go to play dates and she hasn’t got a best friend because she hasn’t had the opportunity to make one.
"Even staying with a family friend, she is incredibly anxious. She will ask me: “There are hospitals nearby, aren’t there?” Living with her condition has taken away our freedom.
"Rumer was born premature and was diagnosed with Bartter syndrome. It is a potassium-wasting disease that affects the kidneys and causes excess salt and water to be lost in urine.
"Life with Bartter syndrome has been incredibly difficult for us both. Rumer has a lot of problems, physically and psychologically. Because her potassium levels are constantly plummeting, it affects her muscles. She struggles to walk; she can’t pick things up. Last year we went to Greece on holiday and on day three, the heat was too much, and her potassium dropped. She was incredibly poorly and was flown back to UK on a medical flight and spent eight weeks in the hospital."
“It’s like groundhog day making the pillbox every morning”
"With Bartter syndrome, you have to take potassium and sodium supplements, which are really unpleasant – like drinking salt water.
"I know she thinks: 'Why me?', especially when she sees what other kids her age do. Even the tablets she has to swallow are the size of a chocolate button, as they don’t make the medicine for kids. Plus, they are slow release, so you can’t even crush them. Thankfully we found a pharmaceutical company in the US offered potassium in smaller capsules.
"She takes between four and eight large tablets per day, and each of those is split into four smaller capsules. Then there are 15 other tablets. She does that all herself and she is only 9! It’s like groundhog day making the pillbox every morning. Rumer is also on a special diet, with high potassium and salt. She has to have a high salt* breakfast, something like bacon on toast with salty butter, and if her potassium drops, it affects her muscles, and she is at risk of a cardiac arrest."
* A high salt and high potassium diet is unusual for people living with kidney disease. You should always check with a kidney dietitian before making any changes to your diet.
“It is so difficult for children to accept they are not the same as other people.”
"Bartter syndrome has a massive impact on people’s lives. I had a very good salary, owned my own house, and I slowly had to dip into my savings to pay the mortgage. Eventually I ran out of savings, had to declare myself bankrupt, and then moved back home to Liverpool. I hate the fact that people can’t rely on me – I never know when I’ll need to be in hospital with Rumer, so it is impossible to work. I’m on Universal Credit now.
"Rumer has beautiful skin, she looks healthy. But she’s not well, she is ill, even if other people don’t always understand that.
"It is so difficult for children to accept they are not the same as other people. But I always tell Rumer that I we are a team. I say: 'When the universe said to me, you’re having a baby girl, I picked you. I knew I could take care of you.'"