Little Ben has Severe Hemophilia A with inhibitors and infuses several times a day, but it doesn’t stop him from doing the things he loves.
Meet Ben Dasilva!
Age: 22 months old
From: Connecticut, USA
Bleeding Disorder: Severe Hemophilia A with Inhibitors
Favorite Color: Green (although yellow is a close second)
Ben loves music and learning. He spends most of his days dancing around, playing with his pretend kitchen, play-doh and surprise egg toys. He knows all the letters, numbers 1-15 and all his shapes in English and Portuguese!
Q & A with Ben’s mom, Maria:
HH: At what age was Ben diagnosed?
MD: Ben was diagnosed at birth with Severe Hemophilia A.
HH: What was your “road to diagnosis”?
MD: I was a known carrier (Intron 22 inversion), and Ben was tested as soon as he was born.
HH: What has been the hardest part of Ben having hemophilia?
MD: We have had many hard days, especially before the port placement. Finding a vein for infusions was almost an impossible task at times. But the worst day so far was definitely learning that Ben developed an inhibitor. The whole family was devastated.
HH: What has been a positive aspect of hemophilia?
MD: Everyday that we don’t have to deal with a bleeding is a wonderful day. We learned to cherish the small things, being able to just play, take a walk or to simply stay home instead of having to take him to hospital is a great day for us.
HH: How has your life been affected by hemophilia?
MD: It affected our lives completely, but we are so incredibly blessed to have such an amazing support system from our families and HTC staff. We moved closer to work so we could be around in case of an emergency, we had to make tough decisions in order to keep up with a good health insurance coverage that included dad changing careers. Grandma quit her job to stay home and care for Ben while we work. Emotionally speaking, we decided not to pity ourselves and feel sorry for our son since day one. We remind ourselves every day how Ben made us better, stronger and united, and he truly is the best thing that ever happened to us all.
HH: Who is your personal hero and why?
MD: Ben is our own little hero. He shows us how simple life is, how the little things can make us happy and how difficult situations can be handled with a smile on our faces.
