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What do we do? We help kids like Bailey & Satria

 

bailey

About Bailey

6 weeks into his life young Bailey began to swell up - so much so that his bellybutton stuck out like a sore thumb. It was later found that Bailey’s particular genetic combination meant that he was 1 in 10,000 people in the world to be diagnosed with Congenital Nephrotic Syndrome. This is a very rare disorder passed down through generations.

Children with this condition have an abnormality where protein leaks excessively from the blood into the urine, leading to the body swelling up with fluid. This condition ultimately leads to kidney failure and over time this is what happened to Bailey.

Bailey and his family travelled several times a week so that he could see “Sam” – the nickname for his dialysis machine that was keeping him alive.

Treatment continued and after countless hours in Hospital, endless amounts of medication, continually disappointing blood test results, Bailey was given the ultimate gift from his dad – the donation of one of his kidneys.

You get to a point where you live everyday for blood work and results. You feel like a robot says Bailey’s mum Melissa. After the transplant, for the very first time in his three-year life, Bailey’s blood results came back completely normal.

Bailey is now an energetic 6 year old boy who loves playing pirates with his mum and baby sister.

We are so proud of Bailey’s achievements, and his fighting spirit. I want all those undergoing similar treatment to know that there can be a light at the end of the tunnel says Melissa.

satria

About Satria

Ever since they can remember Satria’s younger siblings, a sister and two brothers, have prayed nightly with their parents for their big brother’s health. It wasn’t until late last year that their prayers were finally answered. After countless relapses, years of hospital care and what seemed like endless amounts of medication (up to 20 tablets a day at one stage), Satria’s mother Joanne gave him the ultimate gift – the donation of one of her kidneys.

A few weeks after his fifth birthday Satria Dyer-Darmawan started putting on an unusual amount of weight, showing signs of sickness, vomiting and bloating. Soon after he was diagnosed with Nephrotic Syndrome - a condition where the kidney leaks large quantities of protein from circulation into the urine. Satria had a particularly rare form of Nephrotic Syndrome that leads to kidney failure.

The years that followed were challenging. Satria travelled with his family for over an hour, twice a week (at times more), to receive specialist care at The Children’s Hospital at Westmead. Satria was monitored and treated from a very young age on this regular basis, as children with his condition are at great risk of complications including life-threatening bacterial infection and thrombosis. Those treated with steroids frequently experience difficulties with growth, obesity and high blood pressure.

It became such a demanding process that Satria’s mother chose to leave work indefinitely to care for her son. Years went by and due to the nature of his condition Satria’s kidney function continued to decline. This resulted in cycles of poor health and recurring bloating, affecting his appearance and school attendance. There was even a time when bullying became an issue.

Ever since they can remember Satria’s younger siblings, a sister and two brothers, have prayed nightly with their parents for their big brother’s health. It wasn’t until late last year that their prayers were finally answered. After countless relapses, years of hospital care and what seemed like endless amounts of medication (up to 20 tablets a day at one stage), Satria’s mother Joanne gave him the ultimate gift – the donation of one of her kidneys.

There wasn’t a choice – I would have given him my heart if I had to Joanne says. I would have given him anything.

Satria’s kidney transplant transformed his life. He is now 12 years old and an energetic all-rounder in his first year of high school. He is in the top classes, a member of his school’s debating team and an avid soccer player. Satria is looking forward to a future travelling the world.

Satria’s family see themselves as part of an important team – working together to battle kidney disease and now ensuring their eldest stays well with his precious organ. The children have even memorised the exact timing of Satria’s twice-daily medication, which he must take for the rest of his life. They are the first to give a great big warning yell to their mum when it’s pill-taking time.

Joanne says: It takes over your life. There is nothing more terrifying than having to watch your child go through all the pain, infections and side-effects of what you had always thought of as just a disease in a text book

By supporting the Centre for Kidney Research you can help us find a cure. A cure so that children like Satria would not have to go through all that he has endured.