Mason's Recovery Fund
Donation protected
On December 13th, 2015, our 22 month old son, Mason, suffered a devastating stroke. He was transferred to the Children’s Hospital of Pittsburgh, where he was admmitted into the Cardiac Intensive Care Unit. Mason was transferred to the Pediatric Cardiac Care Unit on Christmas Eve, and we were finally able to hold him again, on Christmas Day.
Mason was transferred to a rehabilitation facility on January 5, 2016, where his slow but steady recovery continues. He still suffers from the effects of the stroke, including left side paralysis/weakness and difficulty with chewing and swallowing.
After extensive testing, Mason has been diagnosed with Barth Syndrome, a rare genetic disorder. http://www.ninds.nih.gov/disorders/barth/barth.htm
This disorder decreases the production of cardiolipins essential to the energy metabolism process, leading to heart damage, reduced muscle tone, underdeveloped skeletal muscles, delayed growth, and physical disabilities.
Mason is scheduled to be released from the rehab facility sometime in early February. He will continue to receive physical/occupational and speech therapies at home.
In order to make our home more handicapped-friendly, we need to improve upon the sorts of things we do have, like the ramp to the front door which needs to be secured, installing more child-height handrails on stairwells and down hallways, and even getting a particular model of bed, (rehab recommended), an example of which can be found here: http://thesafetysleeper.com/index.html
In addition, we are trying to purchase an inexpensive, yet reliable vehicle. Once Mason does come home, he will have to return to Pittsburgh regularly for medical care, and occasional trips to the DC area to participate in Barth Syndrome studies may be necessary as well. And right now, we have no vehicle.
Even with working full time, we live paycheck to paycheck, and we can not afford to do any of this on our own. Just the past six weeks, missing as few hours on the job as was possible, we're already behind. It's difficult to ask for help, but right now, we need help. Getting ahead of this means we can stay ahead of this.
Thank you for taking the time to read this and for your kind assistance. Every single dollar helps us make a difference in our son’s recovery.
Chris and Jessie
Mason was transferred to a rehabilitation facility on January 5, 2016, where his slow but steady recovery continues. He still suffers from the effects of the stroke, including left side paralysis/weakness and difficulty with chewing and swallowing.
After extensive testing, Mason has been diagnosed with Barth Syndrome, a rare genetic disorder. http://www.ninds.nih.gov/disorders/barth/barth.htm
This disorder decreases the production of cardiolipins essential to the energy metabolism process, leading to heart damage, reduced muscle tone, underdeveloped skeletal muscles, delayed growth, and physical disabilities.
Mason is scheduled to be released from the rehab facility sometime in early February. He will continue to receive physical/occupational and speech therapies at home.
In order to make our home more handicapped-friendly, we need to improve upon the sorts of things we do have, like the ramp to the front door which needs to be secured, installing more child-height handrails on stairwells and down hallways, and even getting a particular model of bed, (rehab recommended), an example of which can be found here: http://thesafetysleeper.com/index.html
In addition, we are trying to purchase an inexpensive, yet reliable vehicle. Once Mason does come home, he will have to return to Pittsburgh regularly for medical care, and occasional trips to the DC area to participate in Barth Syndrome studies may be necessary as well. And right now, we have no vehicle.
Even with working full time, we live paycheck to paycheck, and we can not afford to do any of this on our own. Just the past six weeks, missing as few hours on the job as was possible, we're already behind. It's difficult to ask for help, but right now, we need help. Getting ahead of this means we can stay ahead of this.
Thank you for taking the time to read this and for your kind assistance. Every single dollar helps us make a difference in our son’s recovery.
Chris and Jessie
Organizer and beneficiary
Kathryn Goodwin Jones
Organizer
Uniontown, PA
Christopher Shellhammer
Beneficiary
