My family and I have made it to New York thanks to the help of our friends and family. We cannot thank you enough. Although we are here, this is just the beginning of our journey. This girls had a long day today, Ashley had her CAT scan & both had their consults. Everything is moving forward as planned. Both will go for pre-surgical testing & Echo-cardiograms tomorrow. Maybe getting an extra appointment thrown in to have Ashley evaluated for POTS but that will be one less thing for us to do later ;)
One week from tomorrow we will be heading to New York for Ashley's surgery. I can't thank enough those of you that have taken the time to read and share our post. This trip would not have been possible without the generous donations we've received so far. Please continue to share, god bless.
We are almost a quarter of the way to our goal! The kindness that has been shown to us the last couple of weeks has given us more hope than we could ever have imagined. Kindness & generosity from people I grew up with but my wife and daughter have never even met. Generosity & help from family. Generosity from people whose only tie to us is that we are all gods children. We only hope that they know the tremendous impact they have made on our lives & we hope one day that we are able to pay it forward. Please continue to share and rallying support. We love you all.
With just over 2 weeks to for our 1st trip to the Chiari Institute in New York we have raised just under $300 dollars. I cannot thank enough those of you who have donated. We anticipated this 1st trip to run about $2500 between airfare, housing, transportation, food, etc.
"Remember, if you ever need a helping hand, it's at the end of your arm, as you get older, remember you have another hand: The first is to help yourself, the second is to help others." -- Audrey Hepburn
Ashley Metz is suffering with a genetic disorder calledArnold Chiari Malformation
. Never Heard of it? Most doctors haven't either which makes receiving the proper care very difficult. To complicate matters further, Ashley has a connective tissue disorder calledEhlers-Danlos Syndrome
. These conditions leave her in persistent severe pain, along with debilitating headaches, problems with balance, vision, hearing, memory loss, loose joints, digestive problems, & malfunctions of the autonomic nervous system.
In addition to her current medical conditions, diagnosed her withFibromyalgia
,Myofascial Pain Syndrome
(which was causing heart problems), & tethered cord syndrome. Ashley is now unable to live the life of a normal teenager and her future is uncertain. During the 2014 - 2015 school year, Ashley, now a senior, has had diffucultly completing an entire week of school due to the pain and headaches her conditions present. Previously, Ashley had been able to maintain a 4.0 grade average but that has slipped this year due to all the missed time, difficulty focusing, and memory loss.
Higher education is in doubt due to her conditions.
Through personal experience along with research, we have learned that there were very few doctors who understood Arnold Chiari Malformation & Ehlers-Danlos Syndrome, let alone how they interact and affect each other. There are no cures at this time, only medications & surgery to help relieve symptoms.
Our exhaustive research has led us to The Chiari Institute in New York. This medical complex is one of the most highly rated institutions that treat patients like Ashley. Not only do they treat all the conditions afore mentioned, they understand how everything is related and treat the conditions as a whole. They are also constantly developing better & more effective treatment options as well as identifying risk factors to help with earlier diagnosis. Ashley has been accepted to be treated at The Chiari Institute of New York and will require invasive surgical procedures.
This has required multiple trips from Wisconsin to New York. Due to our mounting medical bills, coupled with travel costs, it will not be possible for Ashley to get the medical treatment she needs without the kindness and generosity of others. Our Second trip is tentatively scheduled for June 16th, 2015 and we will be in New York for a minimum of 3 weeks. In 2013, Ashley had have brain surgery to correct the Chiari Malformation and to fuse the vertebrae in her neck.
My wife & I hope are that Ashley will soon have relief from the constant debilitating pain that she deals with every day. As she has missed out on so much, we wish she will one day be able to enjoy even the simplest of activities that we all do every day, but for her, are impossible. That Ashley will be able to get back to being a normal teenager and have the best chance at a normal life. Please give what you can, every little bit helps. My family & I humbly thank-you.
Ashly with her Mother Debbie before Ashley decompression (brian surgury) in 2013.
The "Chiari scar" from Ashley's 1st surgery.