Bloomington, Indiana – September 1, 2015 — September is National Sickle Cell Awareness Month. Because it is ‘back to school’ month for most children, the Sickle Cell Disease Association of America wants the public to reflect on the children and adults whose lives, education and careers have been affected by this disease. A Children’s Organ Transplant Association (COTA) family in Maryland understands the impact of sickle cell anemia first hand, and they are very thankful their daughter is able to return to school this month.
According to the Centers for Disease Control and Prevention, sickle cell disease (SCD) affects people of many racial and ethnic groups. In the United States, 90,000 to 100,000 people, mainly African Americans, have SCD. In addition, more than two million people carry the sickle cell gene that allows them potentially to pass the disease on to their children. SCD causes a person’s red blood cells to become hard and sticky, and look like a C-shaped farm tool called a ‘sickle.’ The sickle-shaped cells die early, which causes a constant shortage of red blood cells. When a person does not have enough red blood cells, they have a condition called anemia. In addition, when these misshaped blood cells travel through small blood vessels, they can get stuck and clog the blood flow. Whenever this happens, it results in severe pain, organ damage and sometimes very serious infections.
Kaitlyn Adams of Waldorf, Maryland, suffered with sickle cell anemia since she was born on April 26, 1999. She experienced multiple hospitalization and numerous complications throughout the early years of her life. In 2012, Kaitlyn’s sickle cell complications escalated to the point where they were negatively impacting her quality of life.
Once Kaitlyn started struggling with immense pain and other debilitating side effects, doctors at Children’s National Medical Center in Washington, D.C. determined she was a candidate for a half-match bone marrow transplant, which is the only known ‘cure’ for this disease. This determination made Kaitlyn’s bone marrow transplant imminent because it widened the donor pool, which meant the transplant could happen very quickly.
Tijuana and Paul Adams knew they would need financial help to make it through Kaitlyn’s transplant and be able to maintain their home, their jobs and their son’s college education. In July 2012, Tijuana called the Children’s Organ Transplant Association (COTA) after hearing about the organization through the family’s transplant team.
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers. A COTA fundraising specialist traveled to Maryland in August 2012 to meet with the COTA for Kaitlyn A volunteers and walked them through the entire process. This group of COTA volunteers immediately started raising funds for transplant-related expenses.
Kaitlyn experienced many emotions throughout the days leading up to her bone marrow transplant. There were many tears from losing all of her hair, and constantly feeling sick due to the chemotherapy that was necessary to get her body ready for the new cells. She feared the transplant would be unsuccessful. She was uncertain what to expect, but she was elated when she thought about being sickle cell free. Kaitlyn was determined to have a positive outlook throughout the long and stressful process.
Prior to the transplant, Kaitlyn was admitted to The Johns Hopkins Hospital in Baltimore, Maryland, to prepare her body for this big transformation. She was introduced to the special team of nurses and doctors who would follow and support her throughout her transplant journey. Kaitlyn quickly became known as ‘the cheerful girl with all of the fashionable clothes.’
On June 21, 2013, Kaitlyn received her gift of life from a very special donor, her mom, Tijuana. That day, Kaitlyn’s ‘new birthday’ was celebrated by her entire team of COTA volunteers and numerous friends and family members across the country. The huge, zebra print decorated bulletin board in her hospital room was filled with notes and cards from her many supporters.
Kaitlyn developed a very special bond with her transplant nurses. They knew what to do to make her smile on bad days, like making her chocolate milk shakes. Whenever she needed a word of encouragement, a shoulder to lean on, a word of advice or a funny joke, she could always count on them. Kaitlyn’s routine consisted of taking medicines at least three times per day, being hooked up to her IV pole, trying to eat three meals a day (when she could keep food down), watching her favorite television shows, getting the latest news from her friends on social media and taking laps around the floor.
On July 17, 2014, Kaitlyn and her family left the transplant floor and moved into a nearby recovery housing complex, which was called Believe in Tomorrow. The apartment was very cozy with a family-friendly atmosphere. The Adams family developed a close bond with the four post-transplant families who were recovering there as well. Kaitlyn had a lot of restrictions that included eating certain foods and wearing a mask, and she had to take more than 19 different medications daily. On September 27th, her transplant doctors were very impressed with her test results and they gave the family the ‘thumbs up’ to return to their Waldorf, Maryland, home.
According to Tijuana and Paul, “Kaitlyn’s transplant journey has been very stressful and demanding, but COTA provided a ‘comfort blanket’ because we knew that certain necessities along the way would be taken care of. Once Kaitlyn’s COTA team reached its financial goal, we were given lots of hope that the rest of the transplant would fall into place, and we would not have to stress about financial uncertainty.”
Kaitlyn and her family were graciously welcomed back home in Waldorf with a circle of supporters waving signs and banners, and yelling cheers of joy as the family approached their street. Kaitlyn was deeply touched by the enthusiastic welcome. The adjustment to being home has been a challenge for Kaitlyn, but she is working hard to return to a normal life. Kaitlyn continues to be a staunch advocate for promoting awareness of sickle cell anemia in the hopes of one day being able to see a cure found for this devastating disease.
Prior to her transplant, Kaitlyn shared some thoughts about gratitude with COTA:
I am grateful for being able to wake up each day. And I am grateful for my family and all of my friends who are taking care of me and providing for me as I continue this fight. I am also very grateful that the Children’s Organ Transplant Association has come into my life. Because of COTA, my transplant is possible. Because of COTA, my life is going to change very soon. I am so thankful.
I do worry about getting through my sickle cell anemia. I do worry about the constant pain I am in and how it will continue to impact my life. I worry that other people don’t consider me normal. I worry about my transplant. When I grow up, I dream about being a registered nurse so I am able to give back to others who may have to fight this same fight.
According to Tijuana and Paul, “A miracle occurred as soon as we became a COTA family. Knowing COTA would be by our side throughout Kaitlyn’s transplant journey, with financial and emotional support, paved the way to a successful transplant experience. COTA gave Kaitlyn the opportunity to share her story, which was a true blessing, because she has been able to touch other lives as well.”
Today, Kaitlyn is post-transplant and returning to high school to continue her education and keep working toward her goals. She loves to listen to music, hang out with her friends, and go shopping. Recently, Kaitlyn told COTA her hope for the future is, “that there would be a cure for EVERYONE who has this devastating illness.”
A very appropriate wish for the month of September … National Sickle Cell Awareness Month.
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1534540416toc@m1534540416ik1534540416.