That goofy looking kid was me when I was 11, a year after being diagnosed with a rare and potentially fatal blood disease called Severe Aplastic Anemia. I was in the hospital and Ronald McDonald house for roughly two and a half years.
Those two and a half years were difficult to say the least. Chemo therapy and radiation take a unique toll on the mind, and body. Luckily on Dec 19 2002, two and a half years after my diagnosis, my family received an early Christmas present in the form of good news! The doctor said that we had finally found a bone marrow match!
To speak frankly, this came just in time, my body was now failing at a faster rate than with which the treatment could keep up. I remember telling my mom that if this time didn't work I was ready to go home -she agreed.
Thank God it worked! I gained some curly hair and a new blood type, easy trade-offs for a kid who just wanted to go back outside and into the woods.
We later found out that my match was from a woman named Joanne and she had a thing for Angels.
Joanne and I kept in touch and I went on to live a happy and healthy life.
However, I would always think back at my time in the hospital, both the good and the bad, and couldn't help but think I wanted to do something for these kids who inevitably took my place.
Something that would help them deal with the day to day of being very sick and stuck in a room for long periods of time.
I decided that something would be a charitable organization.
A charitable organization focused on providing a sense of play, fun, and distraction from what is often a very real and very scary reality for any young child.
Thus Wings of Joanne was born! named after my donor and Guardian Angel Joanne.
By combining the latest technology with a child's imagination Wings of Joanne is able to provide something magical; A window into another reality, a virtual reality.
"My blood was entered into the National Bone Marrow Registry about 26 years ago when I participated in a blood drive sponsored by my employer. About 10 years after that drive, I received a phone call from a representative at the HLA Registry, which offers educational programs and coordinates donor recruitment drives, informing me that my bone marrow matched a 12 year old boy who was very sick with Severe Aplastic Anemia. This is where "Our Story" begins....
When I filled out the bone marrow donation forms, one of the forms asked me if I would want to be contacted by the recipient and/or his family after a year, if they wanted to reach out to me. I checked yes. Although we were not able to contact each other directly for that first year, we were able to check with the HLA Registry representative thru phone calls to see how we were feeling, we could mail letters and cards to the HLA and they would forward them. I remember visiting St. Patrick's Cathedral at the beginning of December 2002, I was scheduled to donate bone marrow on December 19. Since I didn't know Caid's name at the time, in my mind I named him Joshua (one of my favorite names) and wrote a note in the visitors book: "Please make Joshua have a successful transplant and go on to live a happy and healthy life." It warms my heart to see that is exactly what he is doing!
I made multiple phone calls that first year to the registry to check on Caid's health. I sent a Christmas card with a photo on the front of a Nantucket type cottage with a Christmas wreath on the door - when we finally did talk, Caid's mom told me the family kept looking at the cottage and wondering if it was a photo of my house (it wasn't). When I sent candies from Pembroke, MA they looked up on a map to see where that was located to see if they could figure out what part of the country I lived in. I also sent Caid a glass pendant to hang in his window to reflect the sun into the room, I have the same one and love it. During that time, I received an absolutely beautiful letter from Caid's mom stating how grateful the family is and how wonderful it is to see her little boy getting healthy. I have two children myself and am grateful to God that I was found to be a match. Enclosed with that letter, was a lovely wooden music box (I love music boxes) that plays "Wind Beneath My Wings" and a Lladro Figurine called The Harvest because when the bone marrow is extracted, it is considered harvested. I treasure these thoughtful gifts.
After the first year, the HLA Registry had a banquet in New Jersey for recipients and donors to finally meet in person. It was great to finally be able to put names and faces on this family who have become so very important in my life. I consider them my family and believe they feel the same way.
I do believe there are angels among us...Caid spent 2 1/2 years in the hospital and Ronald McDonald House and had Chemo and radiation treatments before he received his bone marrow transplant. Caid and his family have been diligently working on establishing this wonderful charity, Wings of Joanne, to purchase Virtual Reality Equipment to help sick kids escape from what is their every day reality for awhile. I commend them for all of their hard work and am truly humbled and honored that they have named this charity with me in mind."