Tuesday, October 20, 2009
Friday, October 16, 2009
BY JOSH MCAULIFFE (STAFF WRITER)
Published: October 16, 2009
Font size: [A] [A] [A]
E-MAIL THIS SHARE THIS
Noah Severino DeSantis was born with a disease that severely hinders his ability to breathe in his sleep.
Now some friends of the Tripp Park infant's family are banding together to raise funds that will help him, as well as his parents, rest a bit easier at night.
On Oct. 24, the Nurses for Noah fundraiser will be held from 3 to 7 p.m. at the Tripp Park Community Center. The event will include food and beverages donated by dozens of local restaurants, a number of basket raffles and, weather permitting, a classic car display.
Tickets are $15 for adults and $5 for children 5-12, and will be available at the door.
All proceeds benefit the DeSantis Fund, which will go toward round-the-clock nursing for Noah, who just returned to Scranton after spending the past few months at Children's Hospital of Philadelphia.
Born on June 16 at Moses Taylor Hospital, Noah, son of Anthony and Jeanne Waznak DeSantis, was transported to CHOP's neonatology intensive care unit on June 18 when his oxygen levels began to plummet.
There, he was put on a ventilator as doctors performed a battery of tests. Eventually, he was diagnosed with congenital central hypoventilation syndrome, an extremely rare respiratory disorder that impairs the body's automatic control of breathing, particularly during sleep.
"He does breathe a little bit (while sleeping), but not much. Not enough to release his carbon dioxide," Mrs. DeSantis said.
Noah received a tracheotomy on July 31, and each night before bed he's hooked up to a ventilator. He will require 24-hour nursing for at least a few years.
Back home since Tuesday, Noah's "doing very well," said Mrs. DeSantis, who has another son, 2-year-old Nico.
"This is a lifelong syndrome," she said. "As of right now, there is no cure. Every kid is different. Our hope is that when he's a little bit older, he'll just need a mask to sleep with. Time will tell."
Mr. DeSantis' best friend, A.J. Zangardi, and the couple's next door neighbors, Jim and Ellen Cummings, came up with the idea for the fundraiser. According to Mrs. Cummings, about 22 residents from the Village at Tripp Park, where the DeSantises live, have stepped forward to help.
"You can't even imagine. And it's all ages," said Mrs. Cummings, noting Dunmore High School, where Mrs. DeSantis teaches, and Northeastern Educational Intermediate Unit, where Mrs. Cummings works, will have dress-down days in support of the cause on Oct. 23.
"One man (from the neighborhood) just stopped and handed us a check. We never saw him before," she added. "It's just been a really, really humbling experience for my husband and I."
"We're 100 percent appreciative of this," Mrs. DeSantis said. "It's extremely nice."
Contact the writer: jmcauliffe@timesshamrock.com If you go
What: Nurses for Noah Fundraiser on behalf of Noah Severino DeSantis
Where: Tripp Park Community Center, 2000 Dorothy St.
When: Oct. 24, 3 to 7 p.m.
Details: Tickets are $15 for adults and $5 for children 5-12, and will be available at the door. For more information, visit the Nurses for Noah page at www.facebook.com.
Published: October 16, 2009
Font size: [A] [A] [A]
E-MAIL THIS SHARE THIS
Noah Severino DeSantis was born with a disease that severely hinders his ability to breathe in his sleep.
Now some friends of the Tripp Park infant's family are banding together to raise funds that will help him, as well as his parents, rest a bit easier at night.
On Oct. 24, the Nurses for Noah fundraiser will be held from 3 to 7 p.m. at the Tripp Park Community Center. The event will include food and beverages donated by dozens of local restaurants, a number of basket raffles and, weather permitting, a classic car display.
Tickets are $15 for adults and $5 for children 5-12, and will be available at the door.
All proceeds benefit the DeSantis Fund, which will go toward round-the-clock nursing for Noah, who just returned to Scranton after spending the past few months at Children's Hospital of Philadelphia.
Born on June 16 at Moses Taylor Hospital, Noah, son of Anthony and Jeanne Waznak DeSantis, was transported to CHOP's neonatology intensive care unit on June 18 when his oxygen levels began to plummet.
There, he was put on a ventilator as doctors performed a battery of tests. Eventually, he was diagnosed with congenital central hypoventilation syndrome, an extremely rare respiratory disorder that impairs the body's automatic control of breathing, particularly during sleep.
"He does breathe a little bit (while sleeping), but not much. Not enough to release his carbon dioxide," Mrs. DeSantis said.
Noah received a tracheotomy on July 31, and each night before bed he's hooked up to a ventilator. He will require 24-hour nursing for at least a few years.
Back home since Tuesday, Noah's "doing very well," said Mrs. DeSantis, who has another son, 2-year-old Nico.
"This is a lifelong syndrome," she said. "As of right now, there is no cure. Every kid is different. Our hope is that when he's a little bit older, he'll just need a mask to sleep with. Time will tell."
Mr. DeSantis' best friend, A.J. Zangardi, and the couple's next door neighbors, Jim and Ellen Cummings, came up with the idea for the fundraiser. According to Mrs. Cummings, about 22 residents from the Village at Tripp Park, where the DeSantises live, have stepped forward to help.
"You can't even imagine. And it's all ages," said Mrs. Cummings, noting Dunmore High School, where Mrs. DeSantis teaches, and Northeastern Educational Intermediate Unit, where Mrs. Cummings works, will have dress-down days in support of the cause on Oct. 23.
"One man (from the neighborhood) just stopped and handed us a check. We never saw him before," she added. "It's just been a really, really humbling experience for my husband and I."
"We're 100 percent appreciative of this," Mrs. DeSantis said. "It's extremely nice."
Contact the writer: jmcauliffe@timesshamrock.com If you go
What: Nurses for Noah Fundraiser on behalf of Noah Severino DeSantis
Where: Tripp Park Community Center, 2000 Dorothy St.
When: Oct. 24, 3 to 7 p.m.
Details: Tickets are $15 for adults and $5 for children 5-12, and will be available at the door. For more information, visit the Nurses for Noah page at www.facebook.com.
Thursday, October 15, 2009
Wednesday, October 14, 2009
I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes, I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.
I hope you dance....I hope you dance.
I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin' might mean takin' chances, but they're worth takin',
Lovin' might be a mistake but it's worth makin',
Don't let some hell bent heart leave you bitter,
When you come close to sellin' out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.
I hope you dance....I hope you dance.
I hope you dance....I hope you dance.
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.)
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.
Dance....I hope you dance.
I hope you dance....I hope you dance.
I hope you dance....I hope you dance..
(Time is a wheel in constant motion always rolling us along
Tell me who wants to look back on their years and wonder where those years have gone)
Tuesday, October 13, 2009
Sunday, October 11, 2009
Thursday, October 8, 2009
Welcome to Holland!
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Tuesday, October 6, 2009
Subscribe to:
Posts (Atom)