Baby Boy in EHT Diagnosed with Extremely Rare Muscle Disorder
Though he hasn't stopped smiling, a little boy named Asher Poolake from EHT was born with Bladder Exstrophy and also Epispadias. In short, this is a rare disorder that affects 1 out of 100,000 births.
In 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 – the ability to control urination is impossible without multiple surgeries.
In which case, Asher's parents have exhausted their resources in trying to make the quality of life for their baby boy better.
Cyndi and Matt have taken Asher to NICU, CHOP, the Ronald McDonald house and more--just to discover that Asher's condition is going to take a lot of time, surgeries, finances and patience to cure.
We are still constantly learning more about his condition, everything he is at a higher risk for and how this is a lifelong journey...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.
With the help of family and friends in South Jersey, Asher's Go-Fund-Me page has raised about $7,000 in just 13 days. With a continuing goal of $10,000, any little bit you are willing to donate is helping this baby boy get by.