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Mum's plea to find cure for rare disease that makes daughter look like 'she’s been punched repeatedly'

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3.0 from 2 votes
Monday, October 15, 2018

PERTH, Scotland - A mum has made a desperate plea to find a cure for a rare life-threatening disease that makes her young daughter swell to twice her size and look like 'she's been punched repeatedly'.

Three-year-old Betsy was rushed to her GP by mum Kerry Blakey when her face, legs and arms ballooned so much that she was forced to cut her clothes off with scissors.

The youngster was originally ­diagnosed with a sinus condition but as her health continued to deteriorate, her parents took her to hospital for a second opinion, reports the Daily Record .

Betsy was diagnosed with Nephrotic Syndrome. The condition causes Betsy's organs and body tissue to puff up and bruise.

The youngster's immune system is also badly affected, putting her at greater risk of catching dangerous infections.

Kerry said: "When her body swells up it looks like she's been punched ­repeatedly in the face.

"Her eyes can become very painful and look like they are closed, even though they are open. The only way to get her clothes off is to cut them with scissors as she actually doubles in size.

"Doctors say they have never seen anything like it. Betsy spent 11 days in quarantine in hospital as they tried to find out what was wrong. At first they thought it was an allergic reaction to something she'd eaten but it soon became clear it was much more serious.

"When we were finally given a diagnosis last October it came as a complete shock.

"We had to quickly learn everything about it. Her kidneys don't work ­properly and filter out all of the good stuff as well as the bad."

Kerry, 40, and husband John, 43, who are also parents to six-year-old Bobby, were then told there's currently no cure.

It can be treated with steroids for a period but this can affect Betsy's bone marrow and growth.

Kerry, from Perth, said: "It's a very serious illness and one that takes many different paths. Our only hope is to use steroids to help plug the holes in Betsy's kidneys and stop them from leaking.

"But the problem with this type of medication is it's really toxic – and she's had nine doses of it already. The doctors are now worried about the toll it will take on her wee body as it can affect her eyes, growth and bone marrow. She's now on what they call a second line medicine, which is ­basically a chemo drug, albeit a very small dose.

"The hope is that this will work but we will have to wait and see.

"It's horrible watching her go through this and awful not knowing what is going to happen next."

Despite everything she has to endure, Betsy always sports a big smile and loves playing in the park.

The little girl could face a kidney transplant in the future as the illness means she's at a higher risk of a complete shutdown.

Kerry said: "We don't know what the future will hold, we try to take each as it comes. Betsy is the bravest girl, she takes it all in her stride.

"No matter how bad she feels Betsy always just gets on with it. We're so proud of her, she's such a little fighter.

"She amazes us all with her positive attitude. What Betsy battles with breaks our hearts but her smile and confidence gets us through each day."

Now Kerry and John have raised more than £4,112 for Kidney Kids ­Scotland, who have supported the family since Betsy's diagnosis, and Nephrotic Syndrome Trust.

Kerry added: "We just want to do all we can to help find a cure and give Betsy the future she deserves."

 

Author: Amanda Keenan
Source: Mirror.co.uk
3.0
3.0 from 2 votes
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