Lila Perry, nine, has a kidney condition known as nephrotic syndrome that causes her body to swell to double in size
A nine-year-old girl needs both of her kidneys removed due to a ‘heartbreaking’ condition that causes her to double in size – resulting in cruel weight jibes.
The kidney condition causes Lila Perry’s body to retain up to eight litres of fluid and when this happens she has been called ‘fat’ or ‘overweight’.
Lila was just four-years-old when she was diagnosed with the disease known as nephrotic syndrome which causes the kidneys to leak protein.
Since developing the condition Lila, from Liverpool, has been treated with steroids. However she is no longer responding to the treatment and now needs to undergo a major operation next month.
The illness was first noticed when her mother Kim, 31 took her to the doctors because she has puffy eyes which she assumed was sinusitis – an inflammation of the sinuses.
When the condition worsened Kim took her to Alder Hey hospital in Liverpool where they identified it straight away.
For the last eight months brave Lila has been in hospital where she has to have daily infusions of protein and be milk fed from a tube.
Since developing the condition Lila, from Liverpool, has been treated with steroids – but they have since stopped worked and she now needs a major operation to remove both of her kidneys
She has faced numerous operations and hurdles, including most recently her bowel becoming inactive and has also been put on dialysis – which she will be on for the rest of her life, until a transplant match is found.
Mum-of-two Kim, from Garston, said: ‘It is heartbreaking.
‘It is quite scary when she swells up because it can affect her breathing.
‘She swells head to toe and in particularly on her face.
Lila has spent the last eight months in hospital where she has to undergo daily infusions of protein and be milk fed from a tube
‘She is usually quite slim but when she relapses she can go from fitting in size seven to eight clothes to age 12 to 13.
‘Sometimes she gets so big her eyes actually look closed even though they are open.
Lila has been put on dialysis – which she will be on for the rest of her life, until a transplant match is found
‘In the past, before she was admitted to hospital, people would comment about her size, because she is usually so skinny and can then look massive.
‘People did look and stare – I would prefer it if people asked and I would tell them about her condition.’
Kim and Lila’s dad Neil said they are both ‘very, very nervous’ for their daughter’s operation and don’t yet know what the future holds.
She added: ‘Doctors were just going to take one kidney out at first but she has just got worse.
‘She knows what is happening and she can actually tell you all about her condition better than anyone.
‘She is sick of feeling ill and she is missing her school friends and her sister Darcie, at home, but she just gets on with it and is always smiling.’
A just giving page has been launched for Lila to fund a holiday to Disney Land for when she recovers and Kim said the family is ‘so grateful and overwhelmed by everyone who is involved’.
She added: ‘What Lila is going through is breaking our hearts but her smile and confidence gets us through each day.’