My daughter is a real ‘kidney warrior’ but Christmas is hard
Since being diagnosed with kidney disease in 2020, Harley-Ray has shown great strength in facing the challenges in front of her. Her mum, Chloe-Jade, says: “She's seven years old now and can tell you so much about how her kidneys work and how she looks after them. She's a very bright and happy little girl and we are incredibly lucky. She is a kidney warrior!”
Harley-Ray is determined to improve people’s understanding of kidney disease and to support research into better treatments for the future. She has made cupcakes and participated in challenges to raise money for our work at Kidney Research UK and is a wholehearted advocate of good kidney health.
By being open about her condition, Harley-Ray is improving kidney knowledge with her friends at school. Chloe-Jade says: “She can show them where her kidneys are and tell them all about the important job they do. She also explains why she has to use the toilet a lot, why it is important for her to drink lots of water every day and how they should too.”
‘Christmas time is not the same’
Harley-Ray’s condition has caused a lot of anxiety for the family, and this can be even more noticeable during the festive period, a time when other children can indulge in treats without the fear of being unwell.
Christmas was a joyful time for Harley-Ray and her family until she contracted a bacterial infection in December 2020. After feeling unwell for the next few months, Harley-Ray’s condition worsened, and she was rushed to hospital.
Chloe-Jade says: “I will never forget the day. Almost see through skin and in agony, Harley-Ray was five years old at this time and I was left with no other option but to ring an ambulance. When we arrived at the hospital, investigations quickly started. Her kidneys were failing, she was very lucky to still be here with us. She then began an intense course of treatment, which was a very distressing time for her.”
Harley-Ray was diagnosed with kidney disease and her lifestyle is now carefully managed to maintain her kidney function for as long as possible. The need for dialysis has, so far, been avoided by following a healthy diet and exercising regularly, although Harley-Ray has been admitted to hospital multiple times with urinary tract infections (UTIs).
Chloe-Jade says: “She’s really good, especially at parties, at controlling how many sugary sweets she has. But Christmas used to be an 'eat what you want' kind of day so she does get upset when she can't have all the fizzy Vimto and chocolate she wants!”
“Christmas time is not the same, she worries about becoming ill again every year. It's always in the back of our minds and as a family we are very concerned at what her future holds.”
Transform treatments for children like Harley-Ray
Harley-Ray has overcome a lot in her short life, but her kidney disease means she has many challenges still to face. There is currently no cure, and life-saving treatments which become a necessity, such as dialysis, can be gruelling and time-intensive. Transplants can take years to receive and will only last an average of 20 years before another is needed.
At Kidney Research UK, we are funding crucial research into new and better treatments for the estimated 7.2 million people living with kidney disease in the UK. Help us to transform treatments and make transplants last forever.
Help transform treatments for children like Harley-Ray
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