After a fun day at the park, we all went back to Lynzie and Joe's house to rest up for Corbyn's Care Walk the next morning. Jake prtended to be a kid again, practicing up for the arrival of his Baby Lila or Baby Sawyer this Fall. :)
Whitney pretended to be a lawn care specialist. ...
I pretended to remember how to play tennis.....
...and Crystal and Jake used their iphone apps to pretend to be ultrasound techs.
We all had a great night laughing and spending time together :) The sisters-in-law :)
Gary, Parker, Dawson, Lynzie, Joe, Corbyn, Callie, Jake, Christina, (Baby Lila/Sawyer), Daniel, Crystal, Kyle, Dean, Eric, Whitney, and I all slept over Corbyn's house and woke up bright and early to head to his Care Walk. Whitney was proud to wear her "Corbyn's Cousin" tank! :)
Corbyn has Beta Thalassemia Major. Thalassemia major, also known as beta thalassemia major or Cooley's anemia, is a genetic blood disorder that causes the body to manufacture an abnormal form of hemoglobin. Hemoglobin is the protein molecule in red blood cells that carries oxygen. Thalassemia major occurs when production of the beta globin protein is affected by gene defects, resulting in red blood cell destruction and anemia.
The most common treatment for thalassemia major is a regimen of regular blood transfusions. Corbyn has tranfusions every 3 weeks.
Patients are often prescribed an additional medication, called chelation therapy, to reduce the damaging effects of the transfusions, since they can cause an abnormal accumulation of iron in the body. Corbyn drinks this medicine every morning like a champ! Most patients are also advised to take daily doses of folic acid. Bone marrow transplantation may be a viable treatment option in some patients, especially children, and those who have full siblings who can serve as matched bone marrow donors. Unfortunately, Corbyn's little sister, Callie is not a bone marrow match, so this is not an option for Corbyn at this time. Though these treatment options have improved the prognosis for many patients, long term survival remains a challenge for those who are affected by severe cases of the disease.
Lynzie and Joe, together with the Cooley's Anemia Foundation, organized a Care Walk through Corbyn's neighborhood. Over 100 friends and family came out to celebrate Corbyn and raise funds for a cure!
Corbyn is an Honorary Fire Fighter, so his fellow firemen were excited to walk in Corbyn's honor!
Corbyn's Papoo was the DJ for the event, and everyone was excited about the event! Corbyn is such a cool kid and we were thrilled to be a part of this event. Lynzie and Joe did an awesome job raising awareness and organzing blood drives in Corbyn's name.
Aunt Cindy and Devin made fabulous shirts to model at the walk :)
And when I talked iwht Lynzie yesterday, she said they raised about $8600 for the Cooley's Anemia Foundation!!!! I bet we can top $10,000 next year! :)
Lynzie is one of the strongest women I know, and I am proud to call her my sister. She is not only a rockstar Mommy (and blogger), she is a devoted Christian who inspires me to be a better follower of Christ. She is a wonderful wife to her adoring husband, Joe. They are one of those couples you look at, and can just SEE the love and respect they share for each other. Lynzie is a pharmacist and a HUGE advocate, not only for her son's healthcare, but for the patients she talks to every day at work. She would hate me for painting her as SuperWoman, but that's just because she's humble. SuperWoman has NOTHING on Lynzie Cammilleri. She is hilARious, too! I am always impressed and refreshed and happy and laughing after a visit with Lynzie.
God picked Lynzie and Joe to be Corbyn's parents, and He couldnt have found a better fit! Corbyn has two of the best parents on the planet, and they will fight for a cure and better treatments and more treatment options until they get results! They walk through this medical journey with confidence and determination, and they educate themselves so they can work with Corbyn's doctors to treat him appropriately.
No 2.5 year old should have to know about blood drives and transfusions and hospitals. Corbyn is a strong little boy who inspires us all and makes us all proud to be a part of his family.
Whitney ADORES her Corbyn :)
And while I wish Corbyn and his parents didnt have to deal with hospitals and tests and blood draws, I am proud to be a part of his cheerleading squad and look forward to the day Lynzie calls and shouts, "They found a cure!"
I dont usually ask for anything from my blog readers, but if youd like to help find a cure for the disease that threatens my nephew's life, please visit HERE to donate or schedule an appointment to donate blood. Every drop counts! And be sure to add a cure and our Corbyn to your prayer list, because we know God listens and answers prayers!
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