|
|
|
|
|
|
|
| Jake is an adorable six-year-old who is tough-as-nails. Beneath his loving and curious demeanor lies a little boy whose sheer character has gotten him through another most challenging year. Jake was born with hemophilia, a condition which prevents his blood from clotting properly. Early is his life, he developed an inhibitor, a complication of hemophilia. His body rejects the clotting factor that is infused to treat bleeding episodes. Treatment of an inhibitor requires large daily doses of clotting factor in an attempt to overcome the inhibitor- a process called “immune tolerance”. This requires the placement of a central catheter. Over the past few years, Jake has had many central catheters surgically implanted in one of the veins leading directly to his heart. However, Jake experienced frequent infections and developed clots with these central catheters resulting in necessary removal and replacement. Two years later, immune tolerance therapy has yet to be successful. Jake recently spent one day a week for 4 weeks receiving a 6 hour infusion of a chemotherapeutic agent in further attempt to eliminate his inhibitor. This level of treatment is reserved for the most complex hemophilia cases. While the results of this unique treatment are pending, Jake continues to receive clotting factor on a daily basis. At this point, a bleeding episode, even from a simple bump or bruise, for Jake often requires hospitalization to manage effectively. Perhaps the most challenging issue is explaining hemophilia to him and helping him feel comfortable with continued infusions of medication as he grows up, balancing concern for his physical well-being with the desire to allow him a normal childhood. Because of his complex issues including hearing impairment, speech delay, and adjustment to living life with hemophilia, he receives additional services in the comfort of his home. These services include speech, art and recreation therapy. As you can see upon meeting Jake, he is a happy 5-year-old who doesn’t let anything slow him down. He has a tremendous spirit which makes him unstoppable as he copes with the roadblocks in his way. He enjoys riding his new bike, going to the park to play and keeping up with his older brother Will who also has hemophilia. Having an established relationship with the Mary M. Gooley Hemophilia Center helped immensely. The staff provided additional education, counseling and comfort, as well as comprehensive medical care for Jake and when he was in the hospital, Center staff visited every day to monitor his medications and care. |
|
|
Total Donations Collected:$1,275.00
|
| Goal: $1,000 |
|
|
|
|
| Thank you for you support! |
|
|
|
|
|
|
|
|
|
Sorry.
Fundraising has ended.
|
|
|
|
