Tyler
Diagnosis: Severe Hemophiliac
Age of diagnosis: Two days old
Describe Tyler's diagnosis:
Tyler has severe Hemophilia B, a rare bleeding disorder that affects his ability to clot normally. People with Hemophilia do not bleed faster, they just bleed longer. In hemophilia one of the clotting factors, proteins needed for the blood to form a clot, is missing or reduced. This inability to clot will cause very painful internal bleeding in muscles, joints, and soft tissues. Serious bleeds can occur in the head, eye, stomach, and muscle around the hip. Some of the bleeds can cause a person to lose a lot of blood, which can cause permanent damage and be life-threatening.
When Tyler was 9-months-old, he developed two major complications of hemophilia. One of these causes anaphylatic reactions, which are severe allergic reactions that are life threathening; the other inhibits his body from getting the benefits of his daily infusion of clotting factor thus there name, Inhibitors. There are only 50 documented cases of Hemophilia B patients with both of these complications like Tyler worldwide.
Phoenix Children's doctors who have treated Tyler:
Dr. Christine Knoll, Dr. Duane Wong, Dr. David Notrica, Dr. Stuart Lacey, Dr. Dorothy Rowe, and Dr. Richard Shindell.
Some of Tyler's favorite things are:
Playing soccer and Wii with his friends (which unfortunately sometimes causes what his mother calls a 'Wii Bleed!), camping, Guitar Hero, "movie nights" with his mom, and playing with his "Buddy", his chocolate labradoodle! Tyler also likes the Simpson's Movie and Transformers, and going to Diamondbacks games with his uncle Dave.
How has Tyler's illness affected his day-to-day life:
Every day Tyler gets an infusion of medicine to help prevent painful internal bleeding episodes that have caused permanent damage to his joints, and have put him at risk for nerve damage. Sometimes they are fatal. Chronic pain will be a huge part of Tyler's life; he already has bleeding episodes that require shots of morphine just to bring him some relief. Unfortunately, Tyler has missed lots of school when he is in so much pain he can't even get out of bed.
What was Tyler's longest hospitalization?
In 2004, Tyler was at Phoenix Children's for three months while they tried to desensitize him to his allergic reactions to the medicine. Tyler typically comes to Phoenix Children's once each month or two. At home, his mom works closely with his guardian angel, nurse Lori Wagner from the Hospital's Hemophilia Treatment Center.
What is Tyler's favorite thing about Phoenix Children's?
Room service! Tyler loves being able to choose his own food from the menu and has been ordering his meals since he was 3-years-old. He loves the playrooms too. The Child Life staff and volunteers help make the hospital so much fun that Tyler gets sad when its time to go home. Tyler loves to "beat everyone at pool in the 2nd floor playroom" and claims to have earned "5 BUCKS!" when he defeated a volunteer.
What is the most difficult aspect of Tyler's treatment?
Each day Tyler must get "poked" for his daily infusion of clotting factor. Sometimes Tyler says he doesn't like starting his day because he knows he is going to get a needle in his arm. The worst part of Tyler's treatment is suffering through the pain which at time is so bad he's not able to get up out of bed. At times, he has needed the Hospital's physical therapists to teach him how to minimize the pain or to help him get up and walking again. Tyler has also missed a lot of school in recent years. This is a major concern. However, when he is in the Hospital he goes to the 1 Darn Cool School to work on schoolwork. Social workers from the Hospital also work with us to get him tutoring at home when he is unable to go to school.
Is there something about Tyler's illness that has changed his philosophy of life?
Tyler says he has learned that you don't always get to do the things you want. Sometimes he really wants to do something with his friends and get a bleed. Tyler has learned to really appreciate what other kids probably take for granted…a bleed free day. He really makes the most out of his good days, and would choose playing outside with his friends over any video game!
Visit Tyler's webpage and support him in his Hemophilia Walk: http://www.active.com/donate/hemophiliaWalkAZ/teamtyler.
