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fact: I always give too much information. When people ask, how's it going? I will spare you the details of the difficulties we face daily on this road, however we are making compromises to prioritize Ethan's physical recovery, so the question is, well do you think it's worth it? I will never respond with a NO. What I will tell you is this, there are a lot of compromises we are making, but at the end of the day I will always be grateful that we've taken advantage of this opportunity to push for a year of physical recovery for Ethan, and I will always push for more healthcare for Ethan. My daily frustrations involve the health implications that we haven't had the resources to address. For example while we put all our resources into physical recovery he suffers with other systems failing which interfere with pretty big ADL's or (activities of daily living). There are so many hoops to jump through to get access to healthcare post SCI. And there are so many suffering with SCI for whom recovery it is not an option at all. Prayers that we will become more whole and equal as a nation and opportunities to heal and reduce suffering will become within reach of us all.
We had a great time at our event, Move Through It, last Friday June 17th. The evening marked the 2nd anniversary of Ethan's spinal cord injury and we couldn't have asked for a better way to spend it and celebrate all of our accomishments and spirit, amongst friends celebrating strength, patience, and perseverance in the midst of challenge. Together we raised enough money for Ethan to access 35 more hours of intense therapy. We're both super thankful for everyone that showed their support either at the party or through donations of refreshments, raffle items, and their time and energy helping to put all the pieces together.
Dear Friends,
As the 2nd anniversary of Ethan's Spinal Cord Injury approaches on June 17th, I want to take a moment to update you on his recovery....
Ethan's Progress:
Due to Ethan's perseverance, the support from family and friends, and the following professionals and organizations , Ethan is healing a bit more everyday...
Ethan works with a trainer, Heather Bakker, through the Fighting Back Scholarship Program weekly.
He works with Bob Chapra weekly, a Feldenkrais practitioner. The Feldenkrais method is concerned with the connection between awareness, movement, and neuroplasticity.
Ethan does horseback riding as therapy once a week at Thorncroft in Malvern, with his instructor Jane Higgins. The riding has an instant and lasting impact on his body and is great for balance, and reacquainting his body with gait patterns.
Josette Cicacci travels to our house weekly to work with Ethan on his recovery. She draws from her combined backgrounds in physical therapy, yoga, and myofascial release.
Ethan spends countless hours at the Rocky Run YMCA working to calm and loosen muscles, stretch, and build strength. And a lot of biking!
We both feel extremely lucky to have all these contributions to his recovery. Because of all this support we know that more is possible. Ethan is eager to get back to Southern California and push himself further within a community of people that have been seeing results for the past 20 years and with just a little more funding that will be possible.
Ethan CAN WALK about 1/8th of a mile with a walker. It takes all his energy. We learned our lesson a few times in the past year that this experience is about patience. When he or I have tried to push the acceleration on his recovery too hard he fell backwards, most times literally. With the frailness of bones after a Spinal cord injury, Ethan can't afford many falls so he has become an expert at pacing himself. It's a give and take, trying to gauge where his body is at and when it is ready to grow stronger and reconnect neural pathways.
Thank you all for your continued support!
Ethan has been home from Project Walk in California since September 2nd and has been making some gains, working daily at the YMCA or with one of the many professionals that have donated their time to help guide Ethan's neurological recovery towards his goals of walking, not only a few steps which he has done(YAY!) but as a mode of transportation. The benefits of the type of therapy he desires also support him in proactively caring for his paraplegic body and helping to reduce the secondary complications of Spinal Cord Injury which are many and effect all bodily systems. We are beginning to recirculate this fundraising page in hopes of getting Ethan back to working with the most experienced trainers at Project Walk in California. What we need the most help with is funding for therapy hours. Ethan was working with the trainers from Project Walk 12 hours weekly this past summer. As many hours as we could afford for him would be amazing going forward but our goals are to at least gain access to a few hours a week so that he has some guidance to support his efforts and hard work. Training sessions on average are $100 per hour. There would be no hope for Ethan to have access to this unless we begin asking for help and support from our community. Thank you so much for following along and anything you can do to lend a hand. There are so many blessing being on this road and one of them is the vulnerability needed to make progress. Although transparency brings discomfort at times it is the only way to make progress and we hope to be as transparent as possible. Independent funding is currently the only way to manage and make gains in recovering from Spinal Cord Injury and we are so thankful HelpHOPELive exists to help us channel funds to those who really need them in timely manner.
Thanks to all for your donations and the help we raised a few thousand dollars towards Ethan's recovery last weekend at the Great Media Garage Sale. It was quite an event with an amazing turnout. I'm still exhausted. But so thankful for all the donations and then the last minute help from friends and family when I found myself drowning in stuff. And a great big thanks to the Media Presbyterian Church for their donations, volunteers, and all the beautiful furniture and picture frames donated by the senior craftsmen. It ended up being a huge undertaking but I think it was a win for everyone, getting rid of stuff, scoring stuff they need for a low low price, and at the very end a lot of people in need walked away with free clothing, books and household items. And now Ethan has a few thousand dollars to build upon so we can get him back out to California to get his legs pumping again. Thankful + Tired! -Stef
Stef has been writing about her experience as partner in the SCI recovery process:
tryinthis.wordpress.com
We are continuously thankful for the support we've been given to make this all possible and hope to share whatever we can to help others along.
..just a quick note to say that McHale, Ethan, and I are in north San Diego county and Ethan has been training at Project Walk San Diego paralysis recovery center since July 1st. Thanks to everyone's generous contributions and encouragement we're hopefully able to afford training here for 8 weeks until the end of August. Ethan set up a schedule of 4 days a week for 3 hours at a time. He is also getting neuro acupuncture treatments 3 times weekly. Hoping to have a new blog entry to share soon and some video's. Progress for most people recovering from a spinal cord injury including Ethan is slow and Ethan will need much more than this 8 weeks but we'll take it one week at a time. I've started trying to brainstorm fundraising ideas for the fall to help Ethan continue his recovery. If you have any ideas let me know. thanks everyone. with love -stef
OUR RAFFLE AND SILENT AUCTION HAS SOMETHING FOR EVERYONE!
Ryan Crowns juice club package, $100, center city
1/2 cord of seasoned wood delivered
la Colombe product basket
Boiron Homeopathic product basket
intro package for 2 to Philadelphia Rock Gym
set of 4 handblown glasses from artist Carmichael Jones
Hunter Moon Herbs product package
3 vouchers for Philadelphia Community Acupuncture
basket & products from Harvey Oak Mercantile
Certicate to Pun’s Toy Shop, $30
Live Nation concert tickets, tower & TLA for 2
2 member passes for the WXPN Xponential Music Festival, 3 days
3 sessions with Fitness Trainers Inc. Malvern
$100 gift card to White Dog Cafe
2 all festival tickets to the 54th Annual Philadelphia Folk Festival
Seven Stones Cafe & Store Gift Basket
House Gift Card
Ceramics by Seda Poulhaus
Handmade Quilt & Afghan
2 -10 session gift certicates to Philadelphia Bikram Yoga
Pun Rugs Gift Card $50
Forest & Main Brewing Co. Gift Basket
Mielcarek’s Cosmetic Center treatment valued at $410
refreshments courtesy of:
Coverdale Farm Preserve CSA, Sweet Water Baking, Yards Brewing,
Lancaster Brewing, 320 Market & Cafe, La Colombe, Trader Joe’s, Seven Stones,
Whole Foods Market.
music: provided by Brian Cassidy, equipment donation: Zeo Brothers
Save the date for a PEP Rally: Pushin Up. Up and out of his chair. Friday June 19th 6-9pm 319 N Edgemont Ave Media PA 19063 during the Media 5 Mile Race. Everyone's welcome. Contact Stef Gentile 215-847-5550 https://www.facebook.com/events/666483163455642/666492406788051/
Please don't let the $75,000 goal turn you away. Our expenses are high because our goal is a long term one. Ethan needs enough time at Project Walk, and very expensive leg braces to make an impact in his recovery. This page will remain active as we continue to push on for recovery over the next few years. Ethan is a very big advocate of the “One day at a time”adage and that it how we will proceed … but it is only possible with your help.
For Updates & Info Please Take a Look At My Blog:
http://www.tooflattires.wordpress.com
Best
Ethan
Following is a link to great article written by Susan Serbin this past fall about a huge effort that took place to make our house entrance accessible for Ethan and ease the burden of his injury.
http://www.delconewsnetwork.com/articles/2014/10/24/media_town_talk/news/doc544a823b2b747296089662.txt?viewmode=fullstory
anyone considering making a donation please check if your employer is willing to match your donation, helpHOPElive has a list compiled here of companies that have gift matching programs:
https://m.helphopelive.org/givingoptions/1315
Or you can check with your companies HR department. Thank You! We are very appreciative and promise to stretch your dollar as far as possible towards Ethan's recovery.
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Make checks payable to:
Help Hope Live
Note in memo:
In honor of Ethan Kairer
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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