A mum has told how her "family has been torn apart" after her bubbly two-year-old daughter became a poorly, hysterical child in desperate need of a kidney transplant.
Alexis Khan woke up with puffy eyes as she approached her second birthday.
Mum Lauren Green, 26, was shocked to learn after her symptoms worsened that Alexis has nephrotic syndrome, a kidney disorder which causes your body to leak too much protein in your urine.
Doctors believe she will now get focal segmental glomerulosclerosis (FSGS) - which will develop into renal kidney disease - meaning she'll need a kidney transplant and dialysis, Derbyshire Live reports.
The youngster is now in and out of hospital now and has started having uncontrollable mood swings, getting depressed, having hot sweats and extreme meltdowns.
Lauren, from Burton, Derbyshire, said: "Alexis had always been a healthy, happy child so when she got ill it was randomly out of the blue.
"The doctors did blood tests and took a urine sample and we got a diagnosis the next day. We were told she had nephrotic syndrome.
"We were really shocked. We just thought it was hayfever.
"We had never heard of it before and neither had our friends and family so it was a very lonely experience."
Lauren, who is also mum to Henry, Oliver, Alaya and step-mum to Thierry, said she and her fiancé, Shane, were just starting to get their heads around the diagnosis when doctors revealed that Alexis was not responding to treatment.
Since then they have been on a rollercoaster journey, that has completely changed their young daughter.
She said: "Alexis wasn’t responding to treatment and was diagnosed with steroid resistance and given a kidney biopsy.
"They say she will get focal segmental glomerulosclerosis (FSGS) and when that takes hold she will have renal kidney disease which means she will need a kidney transplant and dialysis.
"She has been in relapse for nearly three months and the longer she is in relapse the more damage it will do to her kidneys and the quicker she will need the transplant.
"When she does reach transplant there is still 30 per cent to 50 per cent chance of recurrence.
"We have spent 10 weeks in hospital and it has dramatically changed Alexis.
"Before she got ill she was a bubbly, happy, chatty, cheeky little girl and she hardly ever cried.
"But she has started having really bad mood swings, which adults have compared to the menopause.
"She gets depressed, has hot sweats and has extreme meltdowns which are totally out of character."
Alexis’s condition means that when she swells up her albumin [protein in her liver] levels drop.
Although doctors were giving the tot albumin transfusions they have now decided to stop them so she can spend more time at home.
Lauren said: "When her albumin levels drop she gets really tired and she won’t do anything.
"She will be standing at her play kitchen happily and five minutes later she will lie down on the floor and she won’t want you to touch her.
"At the moment she is on four types of medication and it can take up to an hour for them to take blood because of the swelling.
"Three or four of us have to hold her down so they can get the cannula in and she gets so upset.
"She doesn’t understand what is going on.”
Lauren, who is due to give birth to her fifth child in December, said Alexis’ diagnosis has also had a devastating effect on the rest of Lauren’s family.
She said: "It has been horrible for all of us.
"We have got three other kids and I am expecting again so it has been a lot of upheaval.
"My dad lives in Spain but he has been staying over here the last few months helping out doing the school runs while my youngest, who is one, has been staying with grandparents.
"Alexis is in and out of hospital and I don’t want to leave her because she is so poorly and all she asks for is mummy, but I only get to see my other children a couple of times a week because of hospital appointments, school and bedtimes.
"My two boys cried at school and it breaks my heart because it feels like we are being torn apart as a family."
The family are fundraising to raise awareness about nephrotic syndrome and have sent up a GoFundMe page to raise cash for the ward where she is treated.
Lauren added: "We want to buy a veinfinder for the ward to make it easier to insert a cannula, and we want to put some money into NEST charity at Bristol hospital, which is looking to find a cure [for what Alexis has].
"There are also some remedies to help with side effects to make her feel better that we would like to get."
