Shortly after birth, Jackson's mom received the call that absolutely no parent ever wants to receive. "It is an emergency, please bring your baby in immediately." It was the call that changed everything. Lives will never be the same. Jackson's blood test from newborn screenings showed he had tested positive for something called Pompe Syndrome. The best way for me, not a medical professional to describe Pompe is to say this: Pompe syndrome is a rare, inherited, sometimes fatal disorder that disables the heart and skeletal muscles. It is caused by mutations in a gene that makes an enzyme called acid alpha-glucosidase (GAA). Basically is causes continued muscle weakness and heart problems. There is so much more to it. I ask you to please look up Pompe Syndrome and research it or better yet take a moment to say Hello to Jackson's parents.... Ask his mom Melissa how it is every time she has to walk thru the doors at Children's Hospital or you could ask her about her sleepless nights watching her baby to make sure he is breathing okay. How about the heart scan's and blood work he has to endure while all his parents can do is watch. This is a 6month old baby.....he will do all of that for the rest of his life! I can not begin to imagine. I can not put into words how unpleasant the face of Pompe is. Right now there is no cure.
In Spring of 2019 Jackson and his parents will be taking a trip to Duke University. At that time Jack will undergo even more testing and meet with an entire team of specialist from cardiologist, pulmonologist, physical therapist, audiologist, speech therapist, occupational therapist and the geneticist all for Pompe. Jack's parents will learn all they can about Pompe during a 2 day conference as well. This is will ensure Jack gets the best treatment possible and the hope is to give Jackson the very best life he can have. It all comes at a cost!
Like many of us, Jackson's parents bust their asses making a living to support their children, home and now medical bills in this ever demanding society. Taking a week off of work can be impossible if you can't afford to. Taking a trip simply isn't in the budget when the mortgage needs to be paid and maintenance on your home can't wait.
Well this is where all of you come in.....We are asking everyone and anyone to please make a donation so Jackson's parents can go Duke this Spring for Pompe Research without the stress and anxiety of worrying about paying for this trip and the stress and anxiety of missing a week's pay from work. Recently his parents drained their savings because their house needed all new pipes, (as someone in the trades....that is unbelievably expensive, like new car or a trip expensive). Let's help lighten the load and give them one less thing to worry about.
Lets all come together to help Jackson, his Mom Melissa, his Dad Rick and big Brother Logan.
We love you all so much!
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