Continuing My Best Friend’s Journey to Find a Cure

Michelle and I met when we were 11 years old in the 6th grade
at Bellport Middle School. We were inseparable and quickly became part of each other’s families. We went through many of life’s “first moments” together: first crushes, first boyfriends, first kisses, first loves, heartbreaks, make-up, fashion styles, crazy hairstyles including perms gone wrong and the 80's high feathered hair craze. We were married 5 months apart and were each other’s maid of honor. We also have sons that are a little over 1yr apart. We were each other's go to person, a shoulder to cry on, vent our frustrations too and also share in each other’s joyous moments. We loved each other like sisters, and of course we argued with each other like sisters. No matter what life challenges we faced, no matter how long we may have gone at times without speaking, we always went right back to where we left off like time stood still.

On March 6, 2011, I received heartbreaking news that my best friend passed away from her illness, Thalassemia Major, a rare genetic blood disorder. Michelle was only 33, leaving behind 2 beautiful children and many family and friends that loved her dearly. That devastating phone call still replays in my mind clear as day. Losing Michelle, my best friend, my sister, feels like I lost a piece of myself. 

I was the only friend Michelle confided in about her illness, Thalassemia Major (aka Cooley's Anemia). Michelle was born with this illness; it is a rare genetic blood disorder that does not allow the body to produce red blood cells. In order for people with this illness to live,  they have to undergo blood transfusions every three (3) to four (4) weeks beginning as early as three (3) months old and continuing throughout their life. There is also a daily chelation therapy that needs to be done for six (6) to eight (8) hours every night. The chelation therapy is done by inserting a needle into their stomach to pump medicine called desferal to remove excess iron buildup. The common cause of death for Thalassemia Major, is organ failure due to iron overload.

It was difficult watching Michelle battle this illness with the pain she had to endure; daily chelatain therapy, blood transfusions every 3 weeks, to infections resulting in monthly hospital stays. I remember when we were 13 years old, Michelle ended up in the hospital after a fun night out at Adventure Land. This was Michelle first surgery, she had her spleen removed. I was so worried, I thought that she damaged her spleen by going on a ride that held us in really tight and flipped us upside down. It turned out not to be the ride and was caused by her illness. That was only the beginning of numerous hospital stays & surgeries that progressed as we got older. By the age of 20 Michelle started to develop osteoporosis. She never complained, never felt sorry for herself, she just went along with life as a normal person. If you didn't know about her illness you couldn't tell she was struggling inside.

Michelle was a fighter, she wanted to have children, which was extremely rare and risky, but she pushed through it and had two (2) beautiful healthy children, a son and daughter.

I promised Michelle that I would always be there for her, that I would always fight for her and never give up, just as she was always there for me. When she passed away, I knew I had to continue her journey to help find a cure so no one else has to suffer the way that she did

Shortly after Michelle’s passing, I went to the Cooley's Anemia Foundation website and found information about "Care Walk" an upcoming fundraiser. I contacted the event coordinator, who was organizing the Care Walk at Bethpage State Park. I then created my team “In Loving Memory of Michelle Palermo DiMaggio” with Michelle’s family and friends. The Walk was held on May 1, 2011; our team goal was $2,000, which we successfully beat and raised $2,245! Since then I have organized the Cooleys Anemia Care walks & Chinese auction to take place in our childhood hometown of Bellport Village. In the past 3 years of this event, we raised over $30,000.00, which is absolutely amazing!!! I could not have done this without the kindness and generosity of our family, friends and selfless people who have joined and supported these events.

Please help me continue Michelle's journey and join our walk. Our team “In Loving Memory of Michelle Palermo DiMaggio” will be walking in Bellport Village, Bellport, NY 11713 on Sunday, May 18, 2014. Registration begins at 11am on Bell Street across from the Community Center. Following the walk there will be children's entertainment with games, face painting and more. Plus live acoustic music by Jay & Keith from Slingshot, a pop/rock cover band. We are also auctioning off tickets to a taping of the Comedy Central Show The Colbert Report, the highest bidder wins!!! In addition, there will be a chinese auction with great prizes and 50/50 raffle!!! 

This is a great family event, please come down and join us!!! Everyone is welcome, you do not need to participate in the walk to enjoy the days festivities. If you cannot attend the walk event and would still like to help me, please sponsor my team with a donation. I am also accepting gift certificates or gift baskets that can be raffled at the walk. All proceeds will be donated to the Cooley's Anemia Foundation. Here is the direct link to my fundraising page: https://www.tinyurl.com/bellportvillage 

I’m glad I can honor Michelle's memory each year with her family and continue her journey to help find a cure for this painful illness she struggled with.

Thank you for taking the time to read this. For more information about Thalassemia Major (aka Cooley's Anemia) please go to www.thalassemia.org

If you would like to contact me to find out how you can help, please e-mail me at sradonis4caf@gmail.com