Fan with rare disease has a special bond with the NY Jets
Nov 12, 2015 17:01:49 GMT -5
Bing© in Buffalo Chairman likes this
Post by Chesapeakejet on Nov 12, 2015 17:01:49 GMT -5
Man, have some tissues handy...
sports.yahoo.com/blogs/nfl-shutdown-corner/young-fan-with-rare-disease-has-a-special-bond-with-the-new-york-jets-211648779.html
Tricia Dennis says that she has learned more from her 15-year old son Noah than he will ever learn from her, even though he has never uttered one word to her.
Far from your average teenager, Noah will never go to prom or walk in graduation to get his diploma. A resident of Orlando, Noah has a rare condition that makes communication with the outside world nearly impossible.
He doesn't speak but communicates through head nods and messages on an iPad that look like gibberish to everyone but his mother. But while Noah can't speak to the outside world, one person can seemingly get through to him: New York Jets linebacker David Harris.
See, Noah is a big Jets fan even though he's never seen the team play live. But when the Jets are on TV and he catches a glimpse of Harris, his eyes sparkle and dance. There's something about the Jets and Harris in particular that Noah loves.
Noah suffers from schizencephaly, a disorder that is caused by a fetal stroke. His mother, Tricia, early in her pregnancy noticed what she says was an unusual tightening in her womb, leading her to have an ultrasound. Doctors now believe that what she felt was Noah going through seizures and that he suffered a stroke that disrupted the stem cells from migrating to form the brain.
This left Noah with clefts and missing areas in his brain. The left frontal lobe did not develop along with a deep cleft on the right side of the brain. His schizencephaly is considered severe. He hasn't been able to walk since he was four years old as seizures made moving even with a walker impossible.
He can have anywhere from five seizures to 20 a day, ranging from mild to full-body. His brother, River, is 17-years old and has elected to be home schooled so he can stay and care for his brother. He is often the first one to bring medicine or to dial for emergency care if Noah isn't responding.
But there is one thing that seems to connect with Noah. Noah is a New York Jets fan and even though he is unable to communicate like those around him, he responds when his favorite team comes on the television screen or he sees a picture of Harris. There's just something about the long-time Jets linebacker that sparks this young man.
The one thing that Noah can communicate is how much he loves the Jets.
"As a young baby at his first birthday he was given a Jets sports jacket which we have still kept to this day," his mother Tricia told Yahoo Sports.
"His step brother was a huge Jets fan so that was one of the first things Noah took interest in. He has watched several games throughout his life but only within the last two years has his attention began to flourish with watching games and being really excited to see the Jets play. We make sure to make it a big deal when they are playing by putting his favorite snacks together, amping him up and making sure big brother and nanny are watching too. If someone is missing from watching with Noah ... he becomes extremely vocal because that is a big no-no."
Tricia remembers last November when Noah had scoliosis surgery in Miami, one of 30 surgeries he's had in his life, she was flipping through the channels on the television and a Jets game came up on the screen. Noah yelled out, apparently recognizing the team — "it became quite apparent that he was aware of more than we once thought."
"And it's not just any football game, it is the Jets. He knows them, he watches intensely and he gets very vocal. And he loves David Harris. I think he sounds like a coach sometimes when he sees David because he starts getting louder and louder," Tricia said. "Some may not understand the gravity of that statement but to know your child [who] is facing so many challenges can put together that much information to me is nothing short of a miracle."
Knowledge of schizencephaly is still growing, because the birth defect is incredibly rare. He suffers from visual impairment, uncontrollable seizures, muscle atrophy, scoliosis, bone loss, severe motor delays, fine motor delays as well as cognitive delays.
He is also completely paralyzed on the right side of his body. Not surprisingly, he takes a while to adjust to his surroundings. It is quite a burden for Tricia, a single mother, and her oldest son River. But it is something they embrace. They say they've learned more from Noah than he has from them. He's a fighter in a disease that sees so many pass away early.
Most who suffer from schizencephaly don't live past 10 years. Now in his mid-teen years, Noah is defying most outlooks for his life.
Thursday night at a nearby Buffalo Wild Wings in Orlando, Noah's family and friends are hosting a fundraiser for a new floor seating chair for Noah, a fundraiser that coincides with the Jets hosting the Buffalo Bills, a nationally televised game. The hope was to raise enough money for a new chair for Noah.
Instead, that already has been taken care of by an unexpected donor.
"Friday while I was driving I got an email to his fundraiser page and had to pull off the interstate because I was in tears. The Jets sent $1,000 to his fundraiser saying from the New York Jets: 'Noah — The entire Jets organization is thinking about you.' Between the tears and making calls we were overwhelmed with the amazing support and we were shocked Noah's story had actually reached the Jets themselves," Tricia said.
"It is so hard when you are battling the unknown with a disorder not even doctors know much about and here was a whole team and organization doing something that would forever change our lives. I still don't have enough thank you's that could express what that meant."
The contribution from the team covered nearly the entire cost of the floor seating chair.
The new chair will help Noah be at a better height for eating and spending time with the family as well as watching the Jets on television. There's hope that if he does well enough physically, Noah will be able to attend a Jets game next year.
sports.yahoo.com/blogs/nfl-shutdown-corner/young-fan-with-rare-disease-has-a-special-bond-with-the-new-york-jets-211648779.html
Tricia Dennis says that she has learned more from her 15-year old son Noah than he will ever learn from her, even though he has never uttered one word to her.
Far from your average teenager, Noah will never go to prom or walk in graduation to get his diploma. A resident of Orlando, Noah has a rare condition that makes communication with the outside world nearly impossible.
He doesn't speak but communicates through head nods and messages on an iPad that look like gibberish to everyone but his mother. But while Noah can't speak to the outside world, one person can seemingly get through to him: New York Jets linebacker David Harris.
See, Noah is a big Jets fan even though he's never seen the team play live. But when the Jets are on TV and he catches a glimpse of Harris, his eyes sparkle and dance. There's something about the Jets and Harris in particular that Noah loves.
Noah suffers from schizencephaly, a disorder that is caused by a fetal stroke. His mother, Tricia, early in her pregnancy noticed what she says was an unusual tightening in her womb, leading her to have an ultrasound. Doctors now believe that what she felt was Noah going through seizures and that he suffered a stroke that disrupted the stem cells from migrating to form the brain.
This left Noah with clefts and missing areas in his brain. The left frontal lobe did not develop along with a deep cleft on the right side of the brain. His schizencephaly is considered severe. He hasn't been able to walk since he was four years old as seizures made moving even with a walker impossible.
He can have anywhere from five seizures to 20 a day, ranging from mild to full-body. His brother, River, is 17-years old and has elected to be home schooled so he can stay and care for his brother. He is often the first one to bring medicine or to dial for emergency care if Noah isn't responding.
But there is one thing that seems to connect with Noah. Noah is a New York Jets fan and even though he is unable to communicate like those around him, he responds when his favorite team comes on the television screen or he sees a picture of Harris. There's just something about the long-time Jets linebacker that sparks this young man.
The one thing that Noah can communicate is how much he loves the Jets.
"As a young baby at his first birthday he was given a Jets sports jacket which we have still kept to this day," his mother Tricia told Yahoo Sports.
"His step brother was a huge Jets fan so that was one of the first things Noah took interest in. He has watched several games throughout his life but only within the last two years has his attention began to flourish with watching games and being really excited to see the Jets play. We make sure to make it a big deal when they are playing by putting his favorite snacks together, amping him up and making sure big brother and nanny are watching too. If someone is missing from watching with Noah ... he becomes extremely vocal because that is a big no-no."
Tricia remembers last November when Noah had scoliosis surgery in Miami, one of 30 surgeries he's had in his life, she was flipping through the channels on the television and a Jets game came up on the screen. Noah yelled out, apparently recognizing the team — "it became quite apparent that he was aware of more than we once thought."
"And it's not just any football game, it is the Jets. He knows them, he watches intensely and he gets very vocal. And he loves David Harris. I think he sounds like a coach sometimes when he sees David because he starts getting louder and louder," Tricia said. "Some may not understand the gravity of that statement but to know your child [who] is facing so many challenges can put together that much information to me is nothing short of a miracle."
Knowledge of schizencephaly is still growing, because the birth defect is incredibly rare. He suffers from visual impairment, uncontrollable seizures, muscle atrophy, scoliosis, bone loss, severe motor delays, fine motor delays as well as cognitive delays.
He is also completely paralyzed on the right side of his body. Not surprisingly, he takes a while to adjust to his surroundings. It is quite a burden for Tricia, a single mother, and her oldest son River. But it is something they embrace. They say they've learned more from Noah than he has from them. He's a fighter in a disease that sees so many pass away early.
Most who suffer from schizencephaly don't live past 10 years. Now in his mid-teen years, Noah is defying most outlooks for his life.
Thursday night at a nearby Buffalo Wild Wings in Orlando, Noah's family and friends are hosting a fundraiser for a new floor seating chair for Noah, a fundraiser that coincides with the Jets hosting the Buffalo Bills, a nationally televised game. The hope was to raise enough money for a new chair for Noah.
Instead, that already has been taken care of by an unexpected donor.
"Friday while I was driving I got an email to his fundraiser page and had to pull off the interstate because I was in tears. The Jets sent $1,000 to his fundraiser saying from the New York Jets: 'Noah — The entire Jets organization is thinking about you.' Between the tears and making calls we were overwhelmed with the amazing support and we were shocked Noah's story had actually reached the Jets themselves," Tricia said.
"It is so hard when you are battling the unknown with a disorder not even doctors know much about and here was a whole team and organization doing something that would forever change our lives. I still don't have enough thank you's that could express what that meant."
The contribution from the team covered nearly the entire cost of the floor seating chair.
The new chair will help Noah be at a better height for eating and spending time with the family as well as watching the Jets on television. There's hope that if he does well enough physically, Noah will be able to attend a Jets game next year.
