Asher's Medical Expense

This is hard to write since we do not like asking for help or putting our private lives out into the public, but we are at that point. Our little boy, Asher Poolake was born with Bladder Exstrophy and also epispadias. It is a rare disorder that affects 1 out of 100,000 births. Babies with Bladder Exstrophy, the skin, muscle and pelvic hip bones of the lower abdomen are malformed and the bladder protrudes from the skin. The genitals can also be deformed, and muscles surrounding the bladder and urethra fail to function properly. Without normal muscle and neurological function, future continence – the ability to control urination – is impossible without multiple surgeries. This was a major shock when he was born since it was not picked up in any of the ultrasounds. The hospital where we delivered diagnosed him wrong and told us that it is an easy operation. CHOP came that night he was born and rushed him to PA where he stayed a week in the NICU.          Asher underwent his first major surgery (14 hours) on June 26, 2017 to close his bladder and put it back into his body along with associated repairs, and also cut his pelvic bones and reset them.  The cutting of the pelvic bones is to help avoid hip dysplasia that he would otherwise be at extremely high risk for. Asher was confined to a cast that didn't allow him to move anything below his abdomen.  His stay at CHOP ended up being slightly over 4 weeks.  During this time, we were blessed to get into the Ronald McDonald house.  This allowed Cyndi to stay by his side everyday.  I was able to be there 5 days a week, working from the hospital.
     Shortly after our return home at the end of July, Asher started getting kidney infections.. We found out the surgery was not successful and they will have to reconstruct the bladder again in May/June 2018, along with work to his kidneys and more physical reconstruction of his abdomen . After a visit in August, they scheduled his second surgery that was September 14th, 2017.  This was for a dual hernia repair where his intestines were in his groin and facing permenant damage.  At the same appointment in August, our doctors found 4 stones in his left kidney and 6 stones in his right. 
     We are still constantly learning more about his condition, everything he is at a higher risk for and how this is a lifelong journey.  CHOP has been absolutely amazing during all of this, flying in doctors from around the country for his surgeries.  We will both admit that this was hard from the beginning, but we are truly blessed to have Asher in our lives, have an amazing team of doctors always with us, and all of the support from our friends and family through all of this.  Without the doctors, friends, and family, this entire process would be much more difficult. 
     So after all of this, we are trying to prepare for the upcoming surgery and bills associated with that.  We are asking for any donations possible, as it would mean a world of difference to us.  We both understand that sometimes this is simply not possible, so we would also glady accept prayers as well.  From the bottom of our hearts, we thank you.   Baby Asher, Cyndi & Matt


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Cyndi Jenkins 
Egg Harbor Township, NJ
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