Sheffield Children’s Hospital: Mum’s horror as child’s tummy ache revealed as life threatening condition

A shocked South Yorkshire mum has told how her six-year-old daughter's stomach aches turned out to be a rare life-threatening genetic disease.
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Betty, who does not want to reveal her surname, received a phone call from her daughter Esmee's school telling her that 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. When paramedics arrived, they decided to take Esmee into hospital. But when she arrived at Sheffield Children's Hospital, several tests including a urine sample were taken and revealed that Esmee's kidneys had failed.

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She was then taken to the Intensive Care Unit (ICU) where she was sedated, ventilated and put on dialysis. Esmee was then diagnosed with a rare genetic disease called Atypical Haemolytic Uraemic Syndrome (aHUS), a disease where antibodies can attack your cells. The NHS says there are at present about 140 known patients in England, but there are probably many further patients in whom the diagnosis has been missed.

A mum has revealed her horror after her six-year-old daughter's stomach aches turned out to be a rare genetic disease. Daughter Esmee is pictured in Sheffield Children's HospitalA mum has revealed her horror after her six-year-old daughter's stomach aches turned out to be a rare genetic disease. Daughter Esmee is pictured in Sheffield Children's Hospital
A mum has revealed her horror after her six-year-old daughter's stomach aches turned out to be a rare genetic disease. Daughter Esmee is pictured in Sheffield Children's Hospital

It can affect any organ in the body but in Esmee'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.”

Esmee was 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.

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She continues to receive life-saving medication every two weeks and her family are learning how to live with her condition. But Betty has now decided that she wants to raise money for the hospital and when she heard two of her friends were doing the Yorkshire Three Peaks, she decided to join in.

Esmee with her mum Betty. A mum has revealed her horror after her six-year-old daughter's stomach aches turned out to be a rare genetic disease.Esmee with her mum Betty. A mum has revealed her horror after her six-year-old daughter's stomach aches turned out to be a rare genetic disease.
Esmee with her mum Betty. A mum has revealed her horror after her six-year-old daughter's stomach aches turned out to be a rare genetic disease.

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, near Weston Park in Sheffield.

Betty, who is from Rotherham, 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.”

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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.”

Anyone who wants to donate can log onto https://events.tchc.org.uk/fundraisers/TeamEsme to do so.