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Wales Online
Wales Online
Izzy Hawksworth, SWNS & Stephanie Wareham

Mum's horror as little girl's stomach aches turned out to be rare life-threatening genetic disease

A mum has revealed her horror after her six-year-old daughter's stomach aches turned out to be a rare life-threatening genetic disease. Betty, who did not want to disclose her surname, received a call from her daughter Esmée school saying she needed to be picked up as she had a stomach ache, was vomiting and had blood in her urine.

Following an initial visit to their local hospital, a pharmacist advised Betty that she should call 999 and when paramedics arrived, they decided to take Esmée into hospital. But when she arrived at Sheffield Children’s Hospital, several tests including a urine sample were taken and revealed that Esmée's kidneys had failed.

She was then taken to the Intensive Care Unit (ICU) where she was sedated, ventilated and put on dialysis. Esmée was then diagnosed with a rare genetic disease called Atypical Haemolytic Uraemic Syndrome (aHUS), a disease where antibodies can attack your cells. It can affect any organ in the body but in Esmée's case it attacked her kidneys but luckily, she was able to take a life-saving medication called Eculizumab.

Within days she was able to be taken off filtration and was transferred to Nottingham to a regular ward, but Betty described what happened as 'very scary and horrific'. She said: "It was a very scary and horrific time for us but the consultant was so reassuring and professional, so we knew we were in good hands."

Esmée was thankfully discharged just in time for Christmas last year and is now back at school full time and has been able to restart swimming and football lessons. She continues to receive life-saving medication every two weeks and her family are learning how to live with her condition.

Betty decided she wanted to raise money for the hospital and when she heard her friends Martin and Kirsty were doing the Yorkshire Three Peaks, she decided to join in. They will hoping to complete the 25 mile trek in just under 12 hours and are also hoping to raise £5,000 for the hospital.

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Betty, of Rotherham, South Yorkshire, said: "We initially called them crazy until we decided to be crazy too. Then some of our friends and family decided to join us and we are now a team of nine.

"The group chat is filled with links of walking boots, screenshots of the walks we are doing and any training tips for this amazing challenge."

The mum-of-one added: "Not only have they saved Esmée’s life, but they also looked after us so well and were amazing support during such a traumatic time."

Esmee with her parents Betty and Michael (SWNS)

Phoebe Marriott, an events fundraising assistant at the hospital said: "Yorkshire Three Peaks is a really special event and it is amazing to see people take on such a big challenge. We are so grateful for the support of Team Esmée; their fundraising will help Sheffield Children’s to continue providing incredible care for children and young people."

Visit events.tchc.org.uk/fundraisers/TeamEsme to donate.

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