Hope for Debbie & Ashley

 
Raised: $1,955.00
Goal: $3,000.00
 
 
 

Created by

Frank Rocco

348 Friends

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Debbie Rocco & Ashley Metz are Mother & Daughter who are both suffering with a genetic disorder called Arnold Chiari Malformation. Never Heard of it? Most doctors haven't either which ma... more

 
 
 
 
 
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Updated posted by Frank Rocco 10 months ago

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 ;)

 
 
 

Updated posted by Frank Rocco 10 months ago

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.

 
 
 

Updated posted by Frank Rocco 10 months ago

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.

 
 
 
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Created by Frank Rocco on May 27, 2013

Debbie Rocco & Ashley Metz are Mother & Daughter who are both suffering with a genetic disorder called Arnold Chiari Malformation. Never Heard of it? Most doctors haven't either which makes receiving the proper care very difficult. To complicate matters further, they both have a connective tissue disorder called Ehlers-Danlos Syndrome. These conditions leave them in persistent severe pain, along with debilitating headaches, problems with balance, vision, hearing, memory loss, loose joints, digestive problems, & malfunctions of their autonomic nervous system.

Debbie suffered for 7 years with unexplained systems before she finally found a doctor in 2011 who diagnosed her with Arnold Chiari Malformation. In addition, it was found that she had a tethered spinal cord. Desperate for relief, she opted for surgery in the hopes that she could get back to a way of life that so many of us take for granted. She had brain surgery in July of 2011 and 4 months later, surgery to untether her spinal cord. To all of our dismay she had very little improvement, and the surgeon told us there was nothing else he could do for her. He also had no explanation as to why she was still having so many problems.

On to the next doctor who, in addition to her current medical conditions, diagnosed her with Fibromyalgia, Myofascial Pain Syndrome, Dysautonomia (which was causing heart problems), & Gastroparesis. Over the next year Debbie continued to decline and was performing research in an attempt to find anyone who could help. It was during that time that our daughter Ashley, who is now 16, started to have similar symptoms and was also diagnosed with the same disorders. Ashley is now unable to live the life of a normal teenager and her future is uncertain. During the 2012 - 2013 school year, Ashley has not been able to complete an entire week of school due to the pain and headaches her conditions present. Ashley had been able to maintain a 4.0 grade average but that has slipped a bit this year due to all the missed time, difficulty focusing, and memory loss. Ashley is considering taking a few online courses next year, as at this point, going to school every day like everyone else is just not a reality.

Through personal experience along with research, Debbie 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.
Debbie's exhaustive research led her to The Chiari Institute in New York. This medical complex is one of the most highly rated institutions that treat patients like Debbie & 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. Debbie and Ashley have both been accepted to be treated at The Chiari Institute of New York and both will require invasive surgical procedures.

This will require multiple trips from Wisconsin to New York. Due to our mounting medical bills, coupled with travel costs, it will not be possible for Debbie & Ashley to get the medical treatment they need without the kindness and generosity of others. Our first trip is tentatively scheduled for June 16th, 2013 and we will be in New York for a minimum of 2 weeks. Ashley will have brain surgery to correct the Chiari Malformation and to fuse the vertebrae in her neck. Debbie will have further testing performed and surgery will be scheduled for a later date.

My hopes are that my Wife and Daughter will soon have relief from the constant debilitating pain that they deal with every day. For my wife, who has lost so much, to 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 of realizing her dream of going to pastry school. Please give what you can, every little bit helps. My family & I humbly thank-you.


Ashley


Debbie with our Grand daughter Alexis


Debbie's first decompression surgery due to the Chiari Malformation.
 
 
 
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Recent Donations (16)

$1,955 raised by 16 people in 11 months.

$100.00

Anonymous

10 months ago

 

$30.00

Anonymous

10 months ago

 

$25.00

William Metz

10 months ago

 
 

$50.00

Anonymous

10 months ago

 

$50.00

Zeljko Romanovic

10 months ago

 
 

Godwilling it all works out Frank.

 

$200.00

Anonymous

10 months ago (Offline Donation)

 
 

Wish we could do more, I know how long you and your daughter have been suffering with this. God bless.

 

$100.00

Anonymous

10 months ago

 

$1,000.00

Anonymous

10 months ago

 

$100.00

Jeremiah Taylor

10 months ago (Offline Donation)

 
 

Good luck to your family, and God bless!

 

$10.00

Michael Sands

10 months ago (Offline Donation)

 
 

Glad I could help the two of you!

 

1-10 of 16 donations

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