Drew's Walking Journey

This is Drew.  He's turning eight in February 2016 and is currently in 2nd grade.  He lives in Kentucky with Mom, Dad and little brother.

Drew was born with an extremely rare syndrome called TAR Syndrome.  This has resulted in a myriad of issues.  I'll try to keep this simple:  He has a mild blood disorder.  He's had two open heart surgeries to correct various congenital heart defects.  But, outwardly, he has shortened arms because he's missing the bones in each forearm.  He still has both hands with all fingers on either side.   Along with his arms, he also had some leg deformities that prevented him from standing or walking until we had them surgically corrected.

Starting in May 2012, Drew has had seven surgeries on his legs to straighten them and rotate his legs below the knee which prevented him from walking.  It was an intense and lengthy process that took a full 17 months to correct and an additional year of physical therapy to stand and walk for the first time when he was 5 years old.


These surgeries are performed in Southern Florida with a highly-sought surgeon.  Florida is a very long distance to travel for surgeries, but the four specialists ranging from St. Louis to Nashville to Boston we visited said no.   Dr. Paley is singularly the most experienced surgeon in the country and took on the effort with Drew with confidence and thanks to him and his staff, Drew now walks and plays soccer!

But, Drew's surgical needs are not complete.  He is currently scheduled for at least two more surgeries in May 2016, possibly a third.  In addition, we continue to travel to Florida every 3-6 months for regular follow-ups.  We anticipate our expenses in May to be significant as his surgeries will occur within weeks of each other, so whether we stay down there for multiple weeks or travel back and forth, financially it will be stressful.

We've done months of fundraising through various methods such as auctions and 5K's which were tremendously helpful to fund expenses during the initial 17-month period of surgeries in which we lived in Florida for months at a time.  And, we've utilized various charitable groups for our one-day visits to fund travel expenses, but our trip in May will be significant so I thought I'd attempt a Gofundme to help relieve the other national and local charitable groups that I have sought assitance from numerous times.

The money will be used to purchase airplane tickets for each of us to and from Florida.  We'll also be staying in Florida for two to four weeks, maybe more and will be staying at a special house for families traveling for medical purposes or, if they're booked (in May, this will be our 8th trip and they were booked EVERY time I've tried to secure a reservation) we'll stay at a hotel with a discounted rate.  These rooms will cost anywhere from $35/night to $99/night.  We'll also require the use of a rental car.

I could never in a thousand years even begin to accurately and wholly describe how immensely grateful we are to our local community and their support.  There are no words to fully encapsulate how accepting they are of Drew and how much they've helped us in the past.  I'm not being falsely boastful when I give credit to our community for being responsible for the miracle of Drew walking.  I just can't say enough how much we appreciate everybody's love and support and I hate to have to continue to ask for help as everybody has been tremendous and I feel like we're just taking-taking-taking, but getting Drew the medical attention he needs to walk and continue to improve means so much to everybody and I know that a lot of people will still be so glad to be a part of it.

Anybody who would like more information about Drew, can visit www.drewunarmed.com where I have documented all of Drew's adventures and challenges in this personal blog of mine. 

Thank you for sharing!