I decdided to start the webpage mostly for myself - it's easier to type than to write in a journal and I've always got things running around in my head. I think it's important for me to do this because it's kind of theraputic. I'd like to dedicate this to my entire family, I love you all very much and appreciate everyone's support.
For most of you who will read this, you know what started this blog but the few of you who may happen upon it, I have two painfully frightening words for you - SANDHOFF'S DISEASE.
On March 19, 2010 our son Kaleb was diagnosed with this deadly disease. The clinical description for Sandhoff's Disease is a rare, genetic, lipid storage disorder resulting in the progressive deterioration of the central nervous system. It is caused by a deficiency of the enzyme beta-hexosaminidase, which results in the accumulation of certain fats (lipids) in the brain and other organs of the body. Sandhoff disease is a severe form of Tay-Sachs disease. Onset of the disorder usually occurs at 6 months of age. Neurological symptoms may include motor weakness, startle reaction to sound, early blindness, progressive mental and motor deterioration, macrocephaly (an abnormally enlarged head), cherry-red spots in the eyes, seizures, and myoclonus (shock-like contractions of a muscle). Other symptoms may include frequent respiratory infections, doll-like facial appearance, and an enlarged liver and spleen. There is no treatment for this disease and it is always fatal. Death usually occurs by age 3 and is generally caused by respiratory infections.
We celebrated Kaleb's second birthday on September 25, 2010.
UPDATE:
On October 3, 2012 - eight days after his fourth birthday, Kaleb lost his battle with this disease. He was always our Angel and now he has his wings, fly high little man, until we meet again.
For most of you who will read this, you know what started this blog but the few of you who may happen upon it, I have two painfully frightening words for you - SANDHOFF'S DISEASE.
On March 19, 2010 our son Kaleb was diagnosed with this deadly disease. The clinical description for Sandhoff's Disease is a rare, genetic, lipid storage disorder resulting in the progressive deterioration of the central nervous system. It is caused by a deficiency of the enzyme beta-hexosaminidase, which results in the accumulation of certain fats (lipids) in the brain and other organs of the body. Sandhoff disease is a severe form of Tay-Sachs disease. Onset of the disorder usually occurs at 6 months of age. Neurological symptoms may include motor weakness, startle reaction to sound, early blindness, progressive mental and motor deterioration, macrocephaly (an abnormally enlarged head), cherry-red spots in the eyes, seizures, and myoclonus (shock-like contractions of a muscle). Other symptoms may include frequent respiratory infections, doll-like facial appearance, and an enlarged liver and spleen. There is no treatment for this disease and it is always fatal. Death usually occurs by age 3 and is generally caused by respiratory infections.
We celebrated Kaleb's second birthday on September 25, 2010.
UPDATE:
On October 3, 2012 - eight days after his fourth birthday, Kaleb lost his battle with this disease. He was always our Angel and now he has his wings, fly high little man, until we meet again.
My Boys
These are my boys, I love them both dearly and am so happy to have been blessed with them!
My Husband my rock
This is my wonderful husband whom I love so much. We have already gone through so much together and unfortunately, the worst is still to come, thank you for being here for me and being so strong!
Big Sister
This is my step-daughter Jessica, Kaleb's favorite sister.
Big Brother
This is my step-son Andrew. Andrew and Kaleb were born on the same day 23 years apart!
Me and Kaleb
last but not least....this is me with Kaleb.