Dedicating a fun event to benefit a very ill child, has the
power to make a dramatic difference in a 10-year-old's life. So is the
decision for a family in need to accept help.
On Friday, June 1st, Oswegatchie Elementary School students and staff
performed at their annual talent show. There was a variety of very
entertaining Disney-themed acts, including a combination of high energy
and soulful singers, dancers, musicians, gymnasts, martial artists, hula
hoopers, jump ropers and even a twirler. The teachers and staff also
delighted students and the audience with their choreographed ensemble
routine.
The original plan was to donate all of the show's proceeds toward the Cactus Jack Foundation. But when members of the Oswegatchie school community learned that fifth grader Emily Feldman is currently fighting a rare health condition known as Moyamoya disease, they acted quickly. Kim Saucier, one of the teachers involved with directing the talent show immediately proposed to Amie Guarraia, fellow teacher and director of the show, that they approach the school's principal about splitting the proceeds between the two worthy causes.
According to the Mayfield Clinic for Brain and Spine, Moyamoya disease is a disorder caused by blocked arteries at the base of the brain, a life-threatening condition that requires Emily to undergo surgery that focuses on reducing risk of stroke and restoring blood flow to the brain. The name "moyamoya" means "puff of smoke" in Japanese and describes the appearance of the tangle of tiny vessels that form to compensate for the blockage. In the United States, the risk of developing Moyamoya is less than one in 100,000.
When Oswegatchie Principal Nancy Macione announced that the event had raised a total of $1,311, Cactus Jack Foundation's representative Tim Gigliotti joined her and Amie Guarraia on stage to accept the check on behalf of the foundation and the Feldman family. He went on to surprise everyone by stating that Cactus Jack Foundation was not only donating their half of the proceeds to the Feldmans, but was matching it as well.
“Emily is so happy to know that so many people care about her,” said Andrew Feldman, Emily's father.
He said at first it was very difficult for Emily to let people know about her health condition. She didn't want to be labeled as different from everyone else. But it became very important for her teachers to learn about her health challenges and to work around it as a matter of precaution.
The Feldmans also worried about the cost of the extensive medical treatments that Emily will be soon undergoing.
“It's been a tough year,” said Feldman. “I was unemployed for 6 months and recently got a new job so I'm just getting back on my feet.”
Although his wife is employed as a nurse, she will need to take a leave of absence to care for Emily post-operation and there will be a lot of travel involved between their home in Waterford and Boston Children's Hospital where Emily will be treated.
“At first our family felt it was best to keep everything private, for Emily's sake,” said Feldman. “But the more we opened up to people that we are in need, the more I realized that we have to learn to accept support in order to triumph over adversity. It has made all the difference in the world for Emily and my family.”
Feldman credits a physical therapist for pinpointing the true source of all of Emily's health issues. She was there at the recommendation of doctors after she complained of severe foot pain. After observing that one side of her body was significantly weaker than the other, the physical therapist urged that Emily receive some neurological testing. Over the past ten years, Feldman said Emily experienced some very concerning symptoms, from her inability to move one arm as an infant, to collapsing one day at preschool, to having vision, cognitive and hand eye motor skill issues in recent years. He said her primary care physician did not consider her symptoms serious because they were intermittent.
In hindsight, he wished that more diagnostic tests were done much earlier, but it takes major symptoms and a life-threatening diagnosis for insurance to cover testing expenses. As a former ballet dancer who is attuned to the body, Feldman said he "immediately knew something was askew" with Emily's health. It is now considered very likely that all of Emily's symptoms over the years were probably related. Emily 's fainting spells may have been mild transient ischemic attacks (TIA) or mini-strokes due to partially blocked arteries in the brain. Eye glasses and orthotics for flat feet were not the answer to her problems.
The Feldmans consider the many blessings in Emily's situation. They
feel fortunate that she has had few symptoms despite her advanced
Moyamoya condition. As they await Emily's surgery date on June 19,
their main concern is to keep her hydrated, to keep her blood flow
volume strong.
“Youth is on her side. I am thankful that she is young, flexible and malleable,” said Feldman.
It was important to Emily that she not miss any school. Their family was thankful that she could continue to have some semblance of normalcy after she was diagnosed. She will have the summer to recover and look forward to resuming normal activity one month after the surgery.
“I have my faith and I appreciate the support of my family, friends and community,” said Feldman. “I feel like everything is going to be okay.”
If you live in the area, you can help Emily in her challenge to fight Moyamoya disease by going bowling with friends and family at Holiday Bowl (also known as Spare Time) in Groton this Friday, June 8th from 7:00-9:00pm. Tickets are 12.00 each - call 860 235 4654 or e-mail arwenjinn@aol.com or just pay at the door.
To view Emily's Facebook site about her journey to overcome Moyamoya Disease and find out how you can help if you are not able to attend the event, click here: http://www.facebook.com/emilymoyamoya
For more general info about Moyamoya Disease click here: http://www.mayfieldclinic.com/PE-Moyamoya.htm
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| Gigiotti with Guarraia and Macione. |
The original plan was to donate all of the show's proceeds toward the Cactus Jack Foundation. But when members of the Oswegatchie school community learned that fifth grader Emily Feldman is currently fighting a rare health condition known as Moyamoya disease, they acted quickly. Kim Saucier, one of the teachers involved with directing the talent show immediately proposed to Amie Guarraia, fellow teacher and director of the show, that they approach the school's principal about splitting the proceeds between the two worthy causes.
According to the Mayfield Clinic for Brain and Spine, Moyamoya disease is a disorder caused by blocked arteries at the base of the brain, a life-threatening condition that requires Emily to undergo surgery that focuses on reducing risk of stroke and restoring blood flow to the brain. The name "moyamoya" means "puff of smoke" in Japanese and describes the appearance of the tangle of tiny vessels that form to compensate for the blockage. In the United States, the risk of developing Moyamoya is less than one in 100,000.
When Oswegatchie Principal Nancy Macione announced that the event had raised a total of $1,311, Cactus Jack Foundation's representative Tim Gigliotti joined her and Amie Guarraia on stage to accept the check on behalf of the foundation and the Feldman family. He went on to surprise everyone by stating that Cactus Jack Foundation was not only donating their half of the proceeds to the Feldmans, but was matching it as well.
“Emily is so happy to know that so many people care about her,” said Andrew Feldman, Emily's father.
He said at first it was very difficult for Emily to let people know about her health condition. She didn't want to be labeled as different from everyone else. But it became very important for her teachers to learn about her health challenges and to work around it as a matter of precaution.
The Feldmans also worried about the cost of the extensive medical treatments that Emily will be soon undergoing.
“It's been a tough year,” said Feldman. “I was unemployed for 6 months and recently got a new job so I'm just getting back on my feet.”
Although his wife is employed as a nurse, she will need to take a leave of absence to care for Emily post-operation and there will be a lot of travel involved between their home in Waterford and Boston Children's Hospital where Emily will be treated.
“At first our family felt it was best to keep everything private, for Emily's sake,” said Feldman. “But the more we opened up to people that we are in need, the more I realized that we have to learn to accept support in order to triumph over adversity. It has made all the difference in the world for Emily and my family.”
Feldman credits a physical therapist for pinpointing the true source of all of Emily's health issues. She was there at the recommendation of doctors after she complained of severe foot pain. After observing that one side of her body was significantly weaker than the other, the physical therapist urged that Emily receive some neurological testing. Over the past ten years, Feldman said Emily experienced some very concerning symptoms, from her inability to move one arm as an infant, to collapsing one day at preschool, to having vision, cognitive and hand eye motor skill issues in recent years. He said her primary care physician did not consider her symptoms serious because they were intermittent.
In hindsight, he wished that more diagnostic tests were done much earlier, but it takes major symptoms and a life-threatening diagnosis for insurance to cover testing expenses. As a former ballet dancer who is attuned to the body, Feldman said he "immediately knew something was askew" with Emily's health. It is now considered very likely that all of Emily's symptoms over the years were probably related. Emily 's fainting spells may have been mild transient ischemic attacks (TIA) or mini-strokes due to partially blocked arteries in the brain. Eye glasses and orthotics for flat feet were not the answer to her problems.
“Youth is on her side. I am thankful that she is young, flexible and malleable,” said Feldman.
It was important to Emily that she not miss any school. Their family was thankful that she could continue to have some semblance of normalcy after she was diagnosed. She will have the summer to recover and look forward to resuming normal activity one month after the surgery.
“I have my faith and I appreciate the support of my family, friends and community,” said Feldman. “I feel like everything is going to be okay.”
If you live in the area, you can help Emily in her challenge to fight Moyamoya disease by going bowling with friends and family at Holiday Bowl (also known as Spare Time) in Groton this Friday, June 8th from 7:00-9:00pm. Tickets are 12.00 each - call 860 235 4654 or e-mail arwenjinn@aol.com or just pay at the door.
To view Emily's Facebook site about her journey to overcome Moyamoya Disease and find out how you can help if you are not able to attend the event, click here: http://www.facebook.com/emilymoyamoya
For more general info about Moyamoya Disease click here: http://www.mayfieldclinic.com/PE-Moyamoya.htm
Very worthy cause--Emily needs all the help and support of every body. Our prayers and thoughts are with her.
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