WHHS Hearts For Mona and Owen
Donation protected
As some of you may have seen, our friend and WHHS class of 88 Alum Mona Vogel is going through an absolute tragedy. Owen is her 4 year old son.
Mona has not asked for help and I believe she is well insured and medical expenses are covered. I wanted to do this for Mona so that she can take Owen on a trip, create memories with him, or perhaps take unpaid leave from work for a week or two to spend with him when needed.
Mona's words:
"Owen has tay-sachs. Not sure you've heard of it? Neither was I. After over a year of the MRIs, spinal taps, countless blood & urine tests it took to find it, I'm learning. It was the last thing I or any of his doctors expected. It is rare. I have no risk factors. It is progressive and fatal. Left untreated Owen's nervous system will slowly deteriorate while I stand by helplessly and watch. There is no treatment. There is no cure. They're working on it. I pray they hurry and that Owen holds on long enough to be eligible for it. In the meantime, I love. I've learned many things as a new mom. As a tay-sachs mom, I've learned that of everything you teach and learn and do in life, love is the only thing that ultimately matters.
When a less than easy life path lead me to find myself single, 41, and childless, I decided to have a child on my own. I knew it would be neither easy nor universally well received. I emotionally prepared myself for the sleepless nights with no help. I cooked and froze meals to have while recovering from my mandatory c-section. I decided to not to be wounded by declarations that an all loving God would never approve of a child conceived artificially with a stranger. I bought books on alternative family units and how to explain to a child why he doesn't have a father.
I'm old but otherwise healthy. I knew that my age put me at higher risk for every prenatal problem. I knew about autism and down's. I took all the tests. I was determined to do everything in my power to compensate for my age. I drank wheat grass and took up yoga. I never missed a prenatal vitamin or dha. I ate organic. I had no caffeine or artificial sweeteners. I didn't dye my hair. I lived with the acne I got from pregnancy hormones because I didn't want to risk absorbing toxins from medicated soap. I got prenatal massage to optimize circulation.
It worked. I conceived easily. I had a perfect pregnancy. Drs dragged med students into my room to review my tracings. "This is what you're aiming for. That is a happy baby. Usually you won't see this outside of a textbook, but that's the goal."
I'm lucky. Compared to many children in my new community, Owen is doing very well. He's no longer allowed to have watermelon because it's too juicy and poses an aspiration risk to him, but he can still eat. He has been reduced to a 1 word vocabulary, but he makes sound. Assisted, he can still walk. He still laughs. Potty training is not even a consideration, but his bowels still move. Perspective is everything.
Owen was born 12/21/12, the end of the Mayan calendar. Contrary to urban legend, it was never meant to signify doomsday. It is the winter solstice, a day which has been celebrated for millennia as the birth of the sun, the turning point at which darkness is overcome. The 2012 solstice held particular significance for them. It signified the dawn of a long awaited new era. Owen was baptized 3/31/13, the following Easter Sunday, the day Christ overcame death. I know it is more than coincidence. I hold close to my heart the idea that fate has a design and that it will echo my hope. I let go and trust that even if it doesn't, there is a reason for it all that I will someday come to appreciate.
Please feel free to share our story to raise awareness of rare conditions like tay-sachs. With awareness comes concern. With concern comes action. With action comes cure."
Please consider making a small donation so that we can surprise Mona and Owen and bring some sunshine and friendship into a dark time for them.
Mona has not asked for help and I believe she is well insured and medical expenses are covered. I wanted to do this for Mona so that she can take Owen on a trip, create memories with him, or perhaps take unpaid leave from work for a week or two to spend with him when needed.
Mona's words:
"Owen has tay-sachs. Not sure you've heard of it? Neither was I. After over a year of the MRIs, spinal taps, countless blood & urine tests it took to find it, I'm learning. It was the last thing I or any of his doctors expected. It is rare. I have no risk factors. It is progressive and fatal. Left untreated Owen's nervous system will slowly deteriorate while I stand by helplessly and watch. There is no treatment. There is no cure. They're working on it. I pray they hurry and that Owen holds on long enough to be eligible for it. In the meantime, I love. I've learned many things as a new mom. As a tay-sachs mom, I've learned that of everything you teach and learn and do in life, love is the only thing that ultimately matters.
When a less than easy life path lead me to find myself single, 41, and childless, I decided to have a child on my own. I knew it would be neither easy nor universally well received. I emotionally prepared myself for the sleepless nights with no help. I cooked and froze meals to have while recovering from my mandatory c-section. I decided to not to be wounded by declarations that an all loving God would never approve of a child conceived artificially with a stranger. I bought books on alternative family units and how to explain to a child why he doesn't have a father.
I'm old but otherwise healthy. I knew that my age put me at higher risk for every prenatal problem. I knew about autism and down's. I took all the tests. I was determined to do everything in my power to compensate for my age. I drank wheat grass and took up yoga. I never missed a prenatal vitamin or dha. I ate organic. I had no caffeine or artificial sweeteners. I didn't dye my hair. I lived with the acne I got from pregnancy hormones because I didn't want to risk absorbing toxins from medicated soap. I got prenatal massage to optimize circulation.
It worked. I conceived easily. I had a perfect pregnancy. Drs dragged med students into my room to review my tracings. "This is what you're aiming for. That is a happy baby. Usually you won't see this outside of a textbook, but that's the goal."
I'm lucky. Compared to many children in my new community, Owen is doing very well. He's no longer allowed to have watermelon because it's too juicy and poses an aspiration risk to him, but he can still eat. He has been reduced to a 1 word vocabulary, but he makes sound. Assisted, he can still walk. He still laughs. Potty training is not even a consideration, but his bowels still move. Perspective is everything.
Owen was born 12/21/12, the end of the Mayan calendar. Contrary to urban legend, it was never meant to signify doomsday. It is the winter solstice, a day which has been celebrated for millennia as the birth of the sun, the turning point at which darkness is overcome. The 2012 solstice held particular significance for them. It signified the dawn of a long awaited new era. Owen was baptized 3/31/13, the following Easter Sunday, the day Christ overcame death. I know it is more than coincidence. I hold close to my heart the idea that fate has a design and that it will echo my hope. I let go and trust that even if it doesn't, there is a reason for it all that I will someday come to appreciate.
Please feel free to share our story to raise awareness of rare conditions like tay-sachs. With awareness comes concern. With concern comes action. With action comes cure."
Please consider making a small donation so that we can surprise Mona and Owen and bring some sunshine and friendship into a dark time for them.
Organizer and beneficiary
Debbie Parrella
Organizer
Garden City, NY
Mona Vogel
Beneficiary