National Pku Alliance Inc

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Nonprofit Overview

Causes: Down Syndrome Research, Health

Mission: To improve the lives of individuals with pku and pursue a cure.

Community Stories

1 Story from Volunteers, Donors & Supporters

Arthur_C General Member of the Public

Rating: 5

04/22/2016

A Child Really Does Change Everything

Two years ago my daughter was born and that's when everything changed. What was supposed to be a typical, uneventful birth turned into a fury of heart stopping moments that led me to truly appreciate those who serve others.

It started with 36 hours of labor followed by an emergency C-section, at which point they discovered that the umbilical cord had been wrapped twice around my daughter's neck, causing her to lose oxygen to her brain. Within hours of her birth, she started having seizure after seizure. She was transported to one of the best NICUs in the world as the hospital we were in wasn't equipped to deal with this situation. Over the next 24 hours she had over 100 seizures until finally doctors were able to control her with a combination of two powerful anti-seizure medications. MRI scans showed brain damage to both sides of the brain, caused by lack of oxygen. Her prognosis was unknown. Doctors said it could range from her being completely fine to severe disability to a 50% chance of her not making it past her first birthday. We were shocked to our core.

The next day, doctors called us in for more news. She had been diagnosed with an incredibly rare genetic disorder, Phenylketonuria or PKU, where a person's body cannot break down an amino acid called phenylalanine and must be on a strict low-protein diet for life. With an occurrence rate of less than one in 15,000 births in the US, we had little information to go on. We felt completely alone, scared, and hopeless.

Luckily we discovered there was a non-profit organization that helps families like ours, The National PKU Alliance (http://www.npkua.org/). All my life I had heard about charities helping people, but now, for the first time, I was on the receiving end. I realized just how incredible it is that there are people out there dedicating the only life they have to helping others. That's when I decided that everything I do from that point on should have a focus of helping others.

Donating to The National PKU Alliance was a start, but I needed to do more. Because our daughter would have to be on a strict diet that also excludes all animal meat, my wife and I decided this was the perfect time to go vegan and do our part to support animals. I also started a company, CharityPush, that partners with non-profit organizations and helps them raise money just by having people download completely free mobile apps. It doesn't cost the users or the organization a penny and it helps raise awareness for causes that people might not know about.

I hope to help hundreds of charities and touch millions of lives, but if I end up only helping one person, that's still worth everything. I hope my daughter will grow up with the power of giving instilled into her core and help make this world a better place.

Review from #MyGivingStory

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