This one is for Deirdre

Hello. If you happen to stumble upon this blog by chance, just read this note. It is not long, I promise.

I'll just tell you a story about a little girl called Deirdre Valeria.

I've always believed in the power of names, they are after all, at best one thing that the world commits to memory about us, when they find us interesting. Some people say our names seal our fate, that they define us. If that is true, then Dee Dee is blessed.

Deirdre has a wonderful name; a sharp Irish name with Celtic roots that means "she who speaks volumes." Her middle name is Valeria and it flows out of your lips with a swift, yet substantial sound to it. No wonder, it derives from the Italian root for Strenght.

In five months of life, Deirdre has spoken volumes to all of us about will and the strenght that derives from knowing that you are loved and needed. She is currently fighting a battle, and although it is complicated, she is not alone. Her family is beautiful, her friends loyal and true. And then there is you... a wonderful stranger that might become a friend ... get to know her and in the process, you might learn something from a little girl with a wonderful name...

Hello everyone,Please take a moment to read this urgent message.

I am asking for your assistance with this critical matter concerning the life of my 5 month old little baby girl. I would really appreciate if you forward this message to everyone you know because we have no medical insurance to cover the transfer and hospital expenses in US mainland.

You can also help by posting the flyers attached in this email in your place of work (if you need a copy of the medical record summary please contact us.)Our 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.---We would be very greatful if you would contribute to this cause.

Please forward this message to all your contacts.

Thank you for your time.

Mark Medina. Cell: 787-806-7196

Vivian Rivera. Cell: 787-313-6955

Deirdres Blog: http://www.alittlemageinthefamily.blogspot.com/