Prayers 4 Paden
Donación protegida
January 2013 Paden was diagnosed with Vanishing White Matter of the brain. Which there is no cure for. He is an awesome little 4 year old boy. He has many doctors appointment.
He was born with the Vacterls syndrome. He has been through 10 surgeries, having 1-3 procedures done in each surgery, with a total of 18 procedures, before the age of 3..
Last summer (2012)he ran, laughed and played, as it got closer to Winter.. He was tripping and falling more than usual. He had an MRI done (11/2012)and it came back abnormal brain matter. So we had genetic testing done(12/2012).. He has 2 exons that are affected, One is a cause of (Mild)Vanishing White Matter (VWM) also known as Childhood Ataxia Central nervous system Hypomyelination (CACH). The other has never been reported before. To date he can no longer walk, and losing the use of his hand.. He has marked periods where he can't see and is having a hard time making out people about 7-10 feet away.. Where there is no cure for the horrible disease, we can only do precautionary things, Protect his head from trauma and be very aggressive with reducing fever. He is such a happy, social, and very smart little boy.. Whom I love with all my heart.. This disease will shorten his precious life, How short no one can say, from what I'm finding its saying preteen. So we are taking it one day and a time and making the most of everyday.. Please come see us on Facebook, He has his own page, Prayers 4 Paden, Thank you so much for taking the time to read his story. He is my Hero, I am his mom..
PADENS MOM ( Tracy Robbins )
He was born with the Vacterls syndrome. He has been through 10 surgeries, having 1-3 procedures done in each surgery, with a total of 18 procedures, before the age of 3..
Last summer (2012)he ran, laughed and played, as it got closer to Winter.. He was tripping and falling more than usual. He had an MRI done (11/2012)and it came back abnormal brain matter. So we had genetic testing done(12/2012).. He has 2 exons that are affected, One is a cause of (Mild)Vanishing White Matter (VWM) also known as Childhood Ataxia Central nervous system Hypomyelination (CACH). The other has never been reported before. To date he can no longer walk, and losing the use of his hand.. He has marked periods where he can't see and is having a hard time making out people about 7-10 feet away.. Where there is no cure for the horrible disease, we can only do precautionary things, Protect his head from trauma and be very aggressive with reducing fever. He is such a happy, social, and very smart little boy.. Whom I love with all my heart.. This disease will shorten his precious life, How short no one can say, from what I'm finding its saying preteen. So we are taking it one day and a time and making the most of everyday.. Please come see us on Facebook, He has his own page, Prayers 4 Paden, Thank you so much for taking the time to read his story. He is my Hero, I am his mom..
PADENS MOM ( Tracy Robbins )
Organizador
Tracy Robbins
Organizador
Rockland, ME
