Living with Hemophilia

My son Marco was diagnosed with severe Hemophilia A just one day after he was born. Hemophilia is a blood disorder where the blood does not clot normally. People with hemophilia A often, bleed longer than other people. My son gets spontaneous bleeds on his knees and muscles which leaves him unable to walk. Worse are the times when they are caused by trauma, like when he actually falls down or gets hit on the head.

To treat his condition, our doctor recommends a shot of Factor 8 concentrate to be given via intravenous injection. Ideally, in order to live a normal life, a patient would need at least 3 shots a week. But because treatment is so expensive, we rely on factor 8 donations that come from Canada or Germany. And because there are many patients who rely on free medicine, we quickly run out of them. In those times, we have to buy the treatment ourselves. As Hemophilia is a Life-Long disorder, affording treatment will be even more difficult.

The funds that will be donated will be used to purchase factor 8 concentrates to help Marco live a normal life. At the moment, we only get it at as treatment for bleeds from trauma.

How often does Marco bleed? The other week, we were at his doctor for a bleed on his calf. He was only crawling around the house because he could not walk. Last week we were at the hospital and were discharged just a couple of days ago because he was bleeding on his left thigh and his ankle. Just today, he was bleeding from his nose. He has joint bleeds every couple of weeks, if he's lucky. Twice or 3 times a week at the worst. 3 times the doctor suspected intra-cranial bleeding and he had to get CT-Scan and get treated at the hospital. It's a difficult situation to be in.

After treatment, patients are not supposed to use their legs or other affected areas to give it time to heal. That would mean Marco would need crutches or a wheelchair too. At the moment, what I do is carry him wherever he has to go but he is now 30 kilograms and growing.

While every parent dreams about their children to succeed in life, be a doctor, a nurse, a pilot, an astronaut or an engineer, my dream is only for my son to live a normal life. Just to wake up everyday with a smile on his face and the hope that everything will be ok.