I am sorry to share with blog readers that Melanie, one of our newer HPS’ers, passed away this past week. I’m so sorry I haven’t posted sooner to let you know, but to be honest, it’s been a very emotional week and I’ve had a hard time doing a lot of things.
Melanie lived past her 26th birthday by one day. Only a few weeks ago she was diagnosed with HPS. As it turned out, her lungs were already quite sick. She was a fighter though.
I can’t help but remember how hard it was to learn that I had HPS in the beginning, and I wasn’t yet very ill. It took some time to adjust, to learn, to gain some perspective. Melanie and her family had a crash course.
Melanie told her friends, according to a post from her brother,
“Doctors told me my only chance I will have is to receive a lung transplant and to be on 24 hour oxygen at home. This condition is rare enough where only 1 of every 100 doctors has ever heard of it yet it is so prevalent in Puerto Ricans that 1 out of every 21 carries it.”
How insightful for someone so newly diagnosed.
Hermansky-Pudlak Syndrome, while occurring all over the world, is as common among Puerto Ricans as cystic fibrosis – yet even there doctors are often at a loss.
As I said, Melanie was a fighter. When she joined the listserv for HPS adults, she announced that she was quickly becoming an advocate for HPS.
It’s very hard to live with HPS if you’re not an advocate. We are a family of advocates – and we have to keep advocating in memory of people like Melanie who demonstrated such bravery, insight and tenacity.
Melanie has siblings who also have HPS.
I can’t even imagine what her entire family must be going through. I can’t imagine the depth of their loss, or the fears they must have for the future. Because I also have a sibling with HPS, when I watch one HPS sibling lose another, it hits me particularly hard.
We have to keep advocating for all the many, many HPS families like Melanie’s.
Imagine how much progress we could make if each and every one of us did one thing a day for HPS. Maybe it’s reaching out to a celebrity like Jennifer Lopez – maybe it’s making a craft for the craft bank – maybe it’s adding another contact to the contact database. Whatever it is, step by step, we have to keep marching forward for all of the people we have lost like Melanie, Elizaria, Blanca, Benny, Victor, Maria and so many others. We have to keep doing it for the families they leave behind, the siblings that must keep fighting HPS and the HPS’ers that aren’t even born yet.
I know many of you have been touched by Melanie, even though we didn’t get to know her very well. I know many of you are grieving as I am. But I know we all consider ourselves lucky to have known her. We must not just grieve. We must use our grief so that one day no family will have to endure what Melanie’s family has endured because of HPS.
Melanie lived past her 26th birthday by one day. Only a few weeks ago she was diagnosed with HPS. As it turned out, her lungs were already quite sick. She was a fighter though.
I can’t help but remember how hard it was to learn that I had HPS in the beginning, and I wasn’t yet very ill. It took some time to adjust, to learn, to gain some perspective. Melanie and her family had a crash course.
Melanie told her friends, according to a post from her brother,
“Doctors told me my only chance I will have is to receive a lung transplant and to be on 24 hour oxygen at home. This condition is rare enough where only 1 of every 100 doctors has ever heard of it yet it is so prevalent in Puerto Ricans that 1 out of every 21 carries it.”
How insightful for someone so newly diagnosed.
Hermansky-Pudlak Syndrome, while occurring all over the world, is as common among Puerto Ricans as cystic fibrosis – yet even there doctors are often at a loss.
As I said, Melanie was a fighter. When she joined the listserv for HPS adults, she announced that she was quickly becoming an advocate for HPS.
It’s very hard to live with HPS if you’re not an advocate. We are a family of advocates – and we have to keep advocating in memory of people like Melanie who demonstrated such bravery, insight and tenacity.
Melanie has siblings who also have HPS.
I can’t even imagine what her entire family must be going through. I can’t imagine the depth of their loss, or the fears they must have for the future. Because I also have a sibling with HPS, when I watch one HPS sibling lose another, it hits me particularly hard.
We have to keep advocating for all the many, many HPS families like Melanie’s.
Imagine how much progress we could make if each and every one of us did one thing a day for HPS. Maybe it’s reaching out to a celebrity like Jennifer Lopez – maybe it’s making a craft for the craft bank – maybe it’s adding another contact to the contact database. Whatever it is, step by step, we have to keep marching forward for all of the people we have lost like Melanie, Elizaria, Blanca, Benny, Victor, Maria and so many others. We have to keep doing it for the families they leave behind, the siblings that must keep fighting HPS and the HPS’ers that aren’t even born yet.
I know many of you have been touched by Melanie, even though we didn’t get to know her very well. I know many of you are grieving as I am. But I know we all consider ourselves lucky to have known her. We must not just grieve. We must use our grief so that one day no family will have to endure what Melanie’s family has endured because of HPS.
Comments
Julie
When you write we laugh with you over the silly things you report. But as Solomon wrote, "To everything there is a season," and for the past two posts it was your season to reflect on the seriousness of this illness. It is a reminder to live each day to the fullest, and to value those we have been given to love. Thank you, Heather for being a voice and a friend to so many. We love you.