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Help Jairus Live Longer and Get New Kidneys

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I believe that no children deserve to suffer at an early age. They should at least see the beauty of the world without pain, play outside the park during sunny weekends, grow from it, and enjoy its bounty. Sadly that is not the case of this angel.

 
April 22, 2013: At the age of three, Jairus Pastor was diagnosed with Nephrotic Syndrome -- a group of symptoms pertaining to kidney problems. Fast forward as of the moment, he is in  End Stage Renal Disease (ESRD) condition, requiring kidney transplant as the only best option to save his life! Imagine what 6 years of on and off hospital treatment have done to his innocent life.


 
WHO IS JAIRUS?
 
Before ESRD, Jairus was a chubby long-haired boy known for his charm and jolly personality. His family would take him and his siblings out for a chill and he will play and mess around like a "normal" child would do. Nobody knew that this would only last for 3 years. Nobody saw it coming.

 
Jairus' parents noticed that his stomach has become bloated with fluids (like an obese child) and his eyes became swollen all of a sudden last 2013. This was 1 month after his mom had just delivered his baby brother, Johan. His dad was alarmed as to why his diapers were always dry even the night as his tummy continues to grow bigger. They rushed Jairus to King Abdulaziz University Hospital (Jeddah, Saudi Arabia) and the medical staff performed ultrasound. They found out that huge amount of fluid has been trapped inside his body and proteins have been drained with his urine before everything got worse and complicated.




JAIRUS' CONDITION NOW
 
June 16, 2015: Hemodialysis treatment was performed 3 times a week because he has no response for steroids, and has been confirmed with  Focal Segmental Glumerulosclerosis by renal biopsy and genetic testing confirmed NPHS1 (a congenital nephrotic syndrome) diagnosis as well.

Now he shifted to peritoneal dialysis because his body can't withstand continuous hemodialysis as it makes him weaker day by day. Imagine blood getting out of his body and entering back in a cycle. What a strong boy! For peritoneal procedure 1,000mL of fluid is being injected into his body, staying there for 1 hour and then drained afterwards. But wait there's more. Multiply it by 12 times! 12,000mL of fluid continuously and delicately monitored for 12 hours starting from 10pm to 10am the next morning -- EVERY DAY (for 4 years).


EFFECTS OF TOO MUCH MEDICATION
 
Psychiatrists informed Jairus' parents that since the child has been exposed to a traumatizing medical condition at an early age, it has greatly affected his behavior -- thus becoming hyperactive causing some people to think he has autism, but has not. Below are some of the side effects as well:

 
1. Delayed speech

2. Growth disorder

3. No appetite for food

4. Tooth decay

 
His hair is still intact and thick, which should have fallen off by now says his doctor, but miraculously isn't. He's not allowed to eat salty and fatty foods as he is not urinating and has high levels of creatinine.

 
His parents are continuously monitoring his potassium levels since too much of this will cause increased heart rate and cardiac arrest. Peritoneal dialysis also could make things worst if done improperly causing a fluid overflow to his lungs and heart. So everything has to be done correctly.

 
JAIRUS NEEDS YOUR HELP
 
There is a good future waiting for this kid. Let us not allow this to be put to waste. The only optimum way to help him is to get new kidneys as he is in end stage (stage 5) now. 

 
It costs US$18,000 alone for the operation procedure and payment for the kidney donor. Another US$17,000 is estimated for the 3-month anti-rejection medication for complete delivery.

 
I am appealing to your kind heart to let us all help this kid out by giving him the gift of another life. Although we know it is God's power to give life, we can extend our help by taking action in donating small amount and together we can help fund his operation AS SOON AS POSSIBLE.


Fundraising team (2)

Elvis Nicolas
Organizer
Mount Cottrell VIC
Edneil Jocusol
Team member

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