It’s so
great to get to post when I get to brag on one of our own. Nisha is a
15-year-old HPSer, recently returned from Space Camp. She was able to get a
scholarship from NOAH.
This may
sound corny, but I see HPS kids as “my kids.” I don’t have kids of my own. Most
of what I do to try to find better treatments, and someday a cure, will likely
never benefit me. It gives me meaning and happiness because I think it will one
day benefit them. I don’t have kids, but I know these kids will live on and
live better lives if we do the work for the cure now.
I’ve known
Nisha’s mom for years and met them both twice at an HPS conference.
I’m very
grateful to them both for being so willing to share their HPS story. You see,
Nisha is the poster child for why all kids diagnosed with albinism should be
screened for HPS. She’s a great example of why it is so important to know for
sure. That’s a hard sell in the medical world, but it is the Nishas I’ve met
that convince me we are right about this issue.
Nisha was
adopted from India. A few weeks after
she arrived, her mom noticed bruises for which there was no obvious
explanation. Nisha’s mom had studied about albinism before brining Nisha home.
She had read a little about HPS in materials provided by NOAH (thank you NOAH
for being willing to work with the HPS Network to do this). She was referred to
the HPS Network and Nisha was tested, even though everyone insisted she
probably didn’t have HPS. It’s rare. It’s a Puerto Rican thing…all of the
common things we’ve all heard before when parents try to get their kids tested
for HPS.
What do you
know but Nisha was positive for HPS. That information probably saved her life a
few weeks later when she required open heart surgery. I shudder to think how
that might have gone if no one realized she had HPS. They would not have seen
it on the pro-op tests. Her platelet count would have been normal, so there
would have been no reason to give her platelets.
But today,
Nisha is thriving and going to Space Camp. She’s a smart girl and has a bright
future ahead of her. I’m proud to be able to brag on her. Grin! Here’s the
story about Nisha in the local paper.
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