Inspired by a letter to God written just four weeks ago by their nine-year-old son Landon, Brooke and Matt McLemore set out to educate others about the disorder that affects him, hemophilia. Hemophilia is a rare, genetic disorder that affects only 20,000 people. The disorder prevents the blood from clotting properly making bleeding into tissue, muscles, or organs (including the brain) the main concern. There are two types: Hemophilia A in which the clotting factor VIII is missing or deficient, and Hemophilia B where the person is missing or deficient in clotting factor IX. Hemophilia A is found in 80% of hemophiliacs making it the most common form. It is also ranked by three levels: mild, moderate, and severe. While males are most commonly affected, it can also been found in females.
Brooke and Matt were unaware that Landon had hemophilia until after he was hospitalized at seven months old for a stomach virus and dehydration. After being discharged, they took him back to his physician for a follow up appointment and noticed bruising where he had been given IV fluids as well as on his legs. The doctor took blood and ran tests, telling the McLemores it could be either leukemia or hemophilia. Within a short while, the tests confirmed the diagnosis of severe Hemophilia B.
At 17 months old, a port was placed into his chest, so Brooke could give his medications at home. The port was then removed at age 4. At 7 years old, Landon began self-administering his medication twice a week and whenever he has some type of injury. This self-administration requires Landon to carefully mix his medicine and "stick" himself with a butterfly needle twice a week. His parents say Landon is a very brave and strong boy, who has an incredible relationship with God.
In the past, treatment was only available from donated blood, in which the missing clotting factor was extracted from the plasma. Hemophiliacs required treatment only when injured. Current treatment provides factor products that do not contain blood plasma. Now preventative treatment can be given up to three times a week instead of only when an injury occurs. Research is being conducted into gene therapy with the hope of a cure on the horizon.
Matt says his son is a natural athlete. He plays basketball and baseball. But contact sports, such as football, are something he will not be able to participate in. Matt's dad was a coach, his brother Mitch is a coach for the Stamford Bulldogs, and his nephew Ty participates in many sports at Stamford High School.
In an email I received earlier this week from Brooke, she said, "We are amazed at how a community can come together and open their hearts to a cause so dear to us. From the bottom of this momma's heart, thank you, thank you, thank you."
Landon and his family will be participating in a walk Saturday, October 19, being held at Lone Star Park in Grand Prairie at 9 a.m. benefiting The Hemophilia Association. His donation page can be found at www.hemophilia.org/walk and clicking on Texas DFW and typing in his team name "Team Landon P4L #23 and clicking donate. If you would like to mail in a donation, checks can be made out to National Hemophilia Association with "in honor of Team Landon P4L #23" in the memo line. Address your envelope to North Texas Central Hemophilia Association, c/o Amanda Matthews, 12700 Hillcrest Rd. Ste. 191, Dallas, TX. 75230. All money raised will go to the National Hemophilia Association to help fund research.