Hoërskool Hugenote learner Jason Lee Pitout (14) was diagnosed with this syndrome when he fell ill in March.
This rare disease attacks the kidneys and causes them to shrink in size.
Jason Lee was diagnosed at the Charlotte Maxeke Johannesburg Academic Hospital in March.
His symptoms first appeared in February, when he experienced unusual swelling and was in excruciating pain.
The teenager is in renal failure and has to undergo dialysis three to four times a day.
A tube was inserted into his stomach and removes the waste from his body.
This type of dialysis allows his parents Nicolene (34) and Phillip (43) Pitout to treat him at home.
Phillip has to take Jason Lee to the Charlotte Maxeke Johannesburg Academic Hospital at least three times a week for proper dialysis.
“They are absolutely brilliant with Jason Lee at the hospital, they cannot do enough for him,” says Elaine Mommsen (66), his grandmother.
She adds Jason Lee is very clever and wants to know all about his treatment.
“He knows almost everything about his condition and what he doesn’t know, he Googles,” she says.
Phillip says, “If they don’t get dialysis, they will die, that’s the bottom line.”
On top of having to undergo daily dialysis, Jason Lee has to take 18 tablets per day indefinitely to replace all necessary deficiencies such as calcium, iron, as well as tablets to keep his blood pressure stable and many others.
Elaine says it’s heart-wrenching to see a child who has to go through something like this and not be able to live like a normal teenager.
Phillip can no longer work as he, along with Nicolene, have to take care of Jason Lee and take him to the hospital three times a week.
Phillip wants to donate one of his kidneys to his son, but says they don’t yet know if he can.
The family are awaiting test results from the United Kingdom which will reveal whether Phillip is a carrier of the gene.
“We have to wait for the blood tests to see if I am a carrier of the gene as it is a genetic disease, and if so, then I won’t be able to donate my kidney to Jason Lee and it has to come from somewhere else,” he says.
The family are struggling to find a balance and are getting help from professionals on how to handle the situation.
Jason Lee desperately wants to go to school and tried attending about two weeks ago, but the school contacted Phillip after two hours as Jason Lee was unwell.
He is not allowed to have more than 500ml of fluids a day and has to follow an extremely strict diet, which excludes anything with salt as this causes fluids to build up and weakens the heart.
Phillip says he will have less chance of a transplant if this happens.
“They drown themselves if they don’t stick to the diet,” he says.
The family made a graph for Jason Lee’s intake and output per day to keep an eye on his symptoms.
“Jason Lee also needs to be kept calm to keep his blood pressure from shooting up,” says Nicolene, “he cannot get upset.”
She adds he is classified as chronically ill.
“We don’t know when we will get the tests or what will happen from there,” says Phillip.
“I am ready, I would give my kidney to him now if I had the chance, but we have to wait.”
Jason Lee says having dialysis and having nothing to do is torture.
“It’s so boring,” he exclaims.
A family member has set up a Facebook page for him called, ‘Jason Lee’s road with kidney disease‘.
The family wants to start giving Jason Lee education from home, but have no idea where to start.
“We just want to thank the school and everyone who has helped them on this hard road so far,” says Elaine.
“We are truly blessed.”
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