This is Edj, my 13-year-old nephew born with hemophilia, a genetic disorder, wherein blood doesn't clot normally. He’s been in and out of the hospital since he was a baby, hampered from living a normal life. Maintaining treatment and a “hemophilia-friendly” lifestyle in the Philippines is expensive. Programs helping his case are also rare.
He attended kindergarten at age 4 but stopped midway since normal activities like coloring books triggered bruising in his palm. He hasn’t returned to school since.
Growing up, there’s been countless of unfortunate incidents. There was one time his cheek swelled after attempting to inflate a party balloon. In 2013, he almost lost his left leg due to severe internal bleeding from dancing.
On a normal day, he’d experience swelling and bleeding in his joints whenever he puts uneven weight on them while sleeping - or without obvious cause.
Every time any serious bruising happened, he had to be confined in the hospital and transfused with Factor VIII, a protein needed to form a clot and stop the internal bleeding. One vial of Factor VIII costs around PHP10,000 (US$200).
Despite his condition, this kid never complains.
Over a week ago, he suffered a cut on his gums, causing it to bleed heavily. Doctors initially injected him with two vials of Factor VIII. But the problem was more severe than we thought. On July 13, he started vomiting blood. The bleeding led to a huge drop in his hemoglobin count and doctors suspected there might be an internal abrasion somewhere. He’s been confined, undergoing blood and Factor VIII transfusions. The affected area of his gums has been cauterized thrice, but continues to bleed. We don’t know how many more transfusions he needs and so far the hospital bill has reached *PHP485,000-plus (US$9,600) - excluding doctors’ fees - and it’s continuously growing. The doctors also said there might be a risk he’s developed allo-antibodies or inhibitors that neutralize Factor VIII because his gums seem to be taking long to heal. If this is confirmed, it means he will need to switch to a stronger blood-clotting protein - Factor VII, which, we were told, costs PHP60,000 (US$1,200) per vial. (We’re praying hard this won’t happen.)
As this is a lifelong disorder, doctors have also advised us to deposit a certain amount to reserve vials for future needs as supply can be a problem.
Although the family continues to work hard and work together to provide for Edj’s medical expenses, it’s never enough. We’ve used up our savings on medical expenses over the years, so we’re humbly asking for your kind help in raising PHP1,000,000 (US$19,700) to settle what we can out of the medical bill and possibly avail of the hospital’s offer to reserve more vials. We’re also trying to sell some assets and get loans.
Edj has big dreams. He wants to finish school (home school), be a doctor, meet people, maybe eventually get married and have a family of his own. He needs all the help he can get to experience life and be assured of a future despite his condition. Thank you very much from the bottom of our hearts.
You may deposit your donations here on GoGetFunding or straight to my accounts:
Bank of the Philippine Islands (BPI)
Jacqueline Joy Therese Patubo
Savings Account No: 8339-4054-85
Bank swift code: BOPIPHMM
Paypal: [email protected]
*Figure updated as of July 20