Yes, it's tomorrow during the day in Lajas, PR. I was unable to post it before, lack of time. But at least here it is! Everything consumed there will be for Deirdre Medina's cause. If you have a team, let the contacts know. Thanks!
Friday, January 25, 2008
Tournament of Basketball & Softball in Lajas
Pro-FONDOS DEIRDRE MEDINA RIVERA
Yes, it's tomorrow during the day in Lajas, PR. I was unable to post it before, lack of time. But at least here it is! Everything consumed there will be for Deirdre Medina's cause. If you have a team, let the contacts know. Thanks!
Yes, it's tomorrow during the day in Lajas, PR. I was unable to post it before, lack of time. But at least here it is! Everything consumed there will be for Deirdre Medina's cause. If you have a team, let the contacts know. Thanks!
Monday, January 21, 2008
HELP NEEDED
...
5 months baby DEIRDRE V. MEDINA needs your help!
She has been diagnosed with Spinal Muscular Atrophy and needs to be taken to the United States for proper Non-Invasive treatment. The medical insurance does NOT cover any transfer or hospital expenses withing the US Mainland, so we need your help. The funding account is at Banco Popular of Puerto Rico, checking account # 041-473272
What is Spinal Muscular Atrophy (Werdning-Hoffman Disease)?
Werdnig Hoffmann disease is a type of spinal muscular atrophy. It is a rare, inherited progressive neuromuscular disorder of infancy characterized by degeneration of groups of nerve cells (motor nuclei) within the lowest region of the brain (lower brainstem) and certain motor neurons in the spinal cord (anterior horn cells). Motor neurons are nerve cells that transmit nerve impulses from the spinal cord or brain (central nervous system) to muscle or glandular tissue.
Approximately 80% of SMA falls into the severe category (SMA1). Infants with SMA1 experience severe weakness before 6 months of age, and the patient never achieves the ability to sit independently when placed. Muscle weakness, lack of motor development and poor muscle tone are the major clinical manifestations of SMA1. Infants with the gravest prognosis have problems sucking or swallowing. Some show abdominal breathing in the first few months of life. Muscle weakness occurs on both sides of the body and the ocular muscles are not affected. A twitching of the tongue is often seen. Intelligence is normal. Most affected children die before 2 years of age but survival may be dependent on the degree of respiratory function.
For infants who appear to develop normally during the first months of life, muscles of the pelvic, trunk, and shoulder areas may initially appear to be disproportionately affected. With disease progression, diminished muscle tone and weakness may gradually spread to affect almost all voluntary muscles, with the exception of certain muscles controlling movements of the eyes. Intelligence is NOT affected.
Infants with Werdnig Hoffmann disease may lack head control, may be unable to roll over or support their weight, and tend to lie relatively still, with little or no movement (flaccid paralysis). In addition, they may develop difficulties sucking, swallowing, and breathing; have an increased susceptibility to respiratory infections; or develop other complications that may lead to potentially life-threatening abnormalities within the first months or years of life. For infants who appear to have normal development for several months prior to the onset of muscle weakness, the disorder may tend to have a more slowly progressive course.
Werdnig Hoffmann disease is inherited as an autosomal recessive trait. Molecular genetic testing has revealed that all types of autosomal recessive SMA are caused by mutations in the SMN (survival motor neuron) gene on chromosome 5. Deletion of the NAIP (neuronal apoptosis inhibitory protein) gene that is close to the SMN gene is also associated with SMA. More patients with Werdnig Hoffman disease (SMA1) than other types of SMA have NAIP deletions. The relationship between specific mutations in the SMN gene and nearby genes and the severity of SMA is still being investigated so classification of SMA subdivisions is based on age of onset of symptoms as opposed to the genetic profile.
5 months baby DEIRDRE V. MEDINA needs your help!
She has been diagnosed with Spinal Muscular Atrophy and needs to be taken to the United States for proper Non-Invasive treatment. The medical insurance does NOT cover any transfer or hospital expenses withing the US Mainland, so we need your help. The funding account is at Banco Popular of Puerto Rico, checking account # 041-473272
What is Spinal Muscular Atrophy (Werdning-Hoffman Disease)?
Werdnig Hoffmann disease is a type of spinal muscular atrophy. It is a rare, inherited progressive neuromuscular disorder of infancy characterized by degeneration of groups of nerve cells (motor nuclei) within the lowest region of the brain (lower brainstem) and certain motor neurons in the spinal cord (anterior horn cells). Motor neurons are nerve cells that transmit nerve impulses from the spinal cord or brain (central nervous system) to muscle or glandular tissue.
Approximately 80% of SMA falls into the severe category (SMA1). Infants with SMA1 experience severe weakness before 6 months of age, and the patient never achieves the ability to sit independently when placed. Muscle weakness, lack of motor development and poor muscle tone are the major clinical manifestations of SMA1. Infants with the gravest prognosis have problems sucking or swallowing. Some show abdominal breathing in the first few months of life. Muscle weakness occurs on both sides of the body and the ocular muscles are not affected. A twitching of the tongue is often seen. Intelligence is normal. Most affected children die before 2 years of age but survival may be dependent on the degree of respiratory function.
For infants who appear to develop normally during the first months of life, muscles of the pelvic, trunk, and shoulder areas may initially appear to be disproportionately affected. With disease progression, diminished muscle tone and weakness may gradually spread to affect almost all voluntary muscles, with the exception of certain muscles controlling movements of the eyes. Intelligence is NOT affected.
Infants with Werdnig Hoffmann disease may lack head control, may be unable to roll over or support their weight, and tend to lie relatively still, with little or no movement (flaccid paralysis). In addition, they may develop difficulties sucking, swallowing, and breathing; have an increased susceptibility to respiratory infections; or develop other complications that may lead to potentially life-threatening abnormalities within the first months or years of life. For infants who appear to have normal development for several months prior to the onset of muscle weakness, the disorder may tend to have a more slowly progressive course.
Werdnig Hoffmann disease is inherited as an autosomal recessive trait. Molecular genetic testing has revealed that all types of autosomal recessive SMA are caused by mutations in the SMN (survival motor neuron) gene on chromosome 5. Deletion of the NAIP (neuronal apoptosis inhibitory protein) gene that is close to the SMN gene is also associated with SMA. More patients with Werdnig Hoffman disease (SMA1) than other types of SMA have NAIP deletions. The relationship between specific mutations in the SMN gene and nearby genes and the severity of SMA is still being investigated so classification of SMA subdivisions is based on age of onset of symptoms as opposed to the genetic profile.
Sunday, January 20, 2008
CLIMBING THE MOUNTAIN
...
Gosh, it all has turned beyond hectic, beyond tiresome... But hope and belief fuels our actions everyday. Our DeeVa is holding on at the hospital, had her Gtube-nissan wrap surgery, and is waiting for the cough assist to see if she gets extubated. Things are moving, slowly but certainly. We need to take her to the US mainland so SMA experts can actually customize the SMA NIV protocol for her...
Yesterday the bank account to gather funds towards this purpose was created. Banco Popular de Puerto Rico, fundraising account for Deirdre Medina is 041-473272. We will appreciate every cent. I will post the flyer as soon as I get it (LightShadow has been working on that, and many other things).
HOME: Home is where the heart is... So right now, home is the hospital.
FRIENDS: Well, they are all keeping themselves busy, and helping DeeVa one way or the other...
LightShadow drowned in work, helping Groundel, helping DeeVa... She's our spokesperson out there in the Wester area... Well, her hands are quite full, and she smiles anyway.
Coriolis, giving us shelter all this time that we've been stranded in Area Metro. He's provided technological assitance to moi so I can keep on in the Internet, as well as he is the co-founder of Deedee's benefit account.
Groundel is in Hormigueros, finally out of the hospital last Monday. He's been cleaning up and putting stuff together, and worrying about Deedee non-stop.
TheMAGE: Tired... Hopefu... He's been the driver all this long, the clown so Deedee laughs continuously, and as loving as ever. He is very tough underneath the soft mask he always wears. He has kept me strong, keeping me from collapsing or surrendering. I love him deeply, and soon our first anniversary will creep on us... A year that has passed changing our lives forever. And I would not have it any other way.
ME: Tired... Very tired. Sleeping 4-5 hours is not good for me. I NEED 9-10 hours to be fully functional... but the need to gather all the info I can so I have the tools to fight for Deedee forces the sacrifice. Hopeful. I truly believe that Deedee will prevail, I can feel it each time I look at her. She has a big purpose ahead of herself... And we are to facilitate the way...
10-4
Gosh, it all has turned beyond hectic, beyond tiresome... But hope and belief fuels our actions everyday. Our DeeVa is holding on at the hospital, had her Gtube-nissan wrap surgery, and is waiting for the cough assist to see if she gets extubated. Things are moving, slowly but certainly. We need to take her to the US mainland so SMA experts can actually customize the SMA NIV protocol for her...
Yesterday the bank account to gather funds towards this purpose was created. Banco Popular de Puerto Rico, fundraising account for Deirdre Medina is 041-473272. We will appreciate every cent. I will post the flyer as soon as I get it (LightShadow has been working on that, and many other things).
HOME: Home is where the heart is... So right now, home is the hospital.
FRIENDS: Well, they are all keeping themselves busy, and helping DeeVa one way or the other...
LightShadow drowned in work, helping Groundel, helping DeeVa... She's our spokesperson out there in the Wester area... Well, her hands are quite full, and she smiles anyway.
Coriolis, giving us shelter all this time that we've been stranded in Area Metro. He's provided technological assitance to moi so I can keep on in the Internet, as well as he is the co-founder of Deedee's benefit account.
Groundel is in Hormigueros, finally out of the hospital last Monday. He's been cleaning up and putting stuff together, and worrying about Deedee non-stop.
TheMAGE: Tired... Hopefu... He's been the driver all this long, the clown so Deedee laughs continuously, and as loving as ever. He is very tough underneath the soft mask he always wears. He has kept me strong, keeping me from collapsing or surrendering. I love him deeply, and soon our first anniversary will creep on us... A year that has passed changing our lives forever. And I would not have it any other way.
ME: Tired... Very tired. Sleeping 4-5 hours is not good for me. I NEED 9-10 hours to be fully functional... but the need to gather all the info I can so I have the tools to fight for Deedee forces the sacrifice. Hopeful. I truly believe that Deedee will prevail, I can feel it each time I look at her. She has a big purpose ahead of herself... And we are to facilitate the way...
10-4
Wednesday, January 09, 2008
UPDATE 2008
Well, some quick changes... So so far...
-Deedee was transferred to the Pediatric Hospital in San Juan... So far 2 thumbs up
-We will be able to be with her from 10am to 9pm... Another 2 thumbs up
-Called my boss and may be able to get work at our SJ office, Yay!
-The Mage and I are staying at Coriolis's Inn for a while
-Setting up my house for sale
-Some people setting up a " rifa" to get funding for Deedee's travel to US
-Some people checking up things for starting a fundraising for Deedee
-Life is definitively faster in this new lane... So keep tuned!
10-4
-Deedee was transferred to the Pediatric Hospital in San Juan... So far 2 thumbs up
-We will be able to be with her from 10am to 9pm... Another 2 thumbs up
-Called my boss and may be able to get work at our SJ office, Yay!
-The Mage and I are staying at Coriolis's Inn for a while
-Setting up my house for sale
-Some people setting up a " rifa" to get funding for Deedee's travel to US
-Some people checking up things for starting a fundraising for Deedee
-Life is definitively faster in this new lane... So keep tuned!
10-4