|To my good friend Sam (raisangrrl)
||[May. 22nd, 2007|07:56 am]
Women or mothers that are "crunchy" or natural.
One of my good friends son died yesterday. He was just 2 years old. His name is Kevin. He had some rare genetic disease that they could not diagnose but they were sure he was going to live long enough for them to figure it out. She tried to nurse him but he was unable to suck due to his illness so she pumped exclusively for 8 months until she found herself pregnant again. I do believe they think he had this : Pompe disease has historically been divided into three forms defined by age of onset and progression of symptoms (see below). More recently there has been a trend to divide the disease into two groups: infantile onset (involving the massive enlargement of the heart) and late onset (no heart enlargement):|
Infantile, or early onset, is noticed shortly after birth. Symptoms include severe lack of muscle tone, weakness, and enlarged liver and heart. Mental function is not affected. Development appears normal for the first weeks or months but slowly declines as the disease progresses. Swallowing may become difficult and the tongue may protrude and become enlarged. Most children die from respiratory or cardiac complications before 2 years of age.
Her name is raisangrrl but she has asked not to be contacted because her son's death was quite sudden and tragic for her.
I have set up a paypal account for her under firstname.lastname@example.org. This is Jeff's email account, since I couldn't do mine. But it is set up for her and all money's will go to her as soon as I learn her paypal account.
I knew he was sick. They had gone to the ER a couple of weeks ago because he aspirated. They sent him home because he just had a virus. I wonder if that virus is what was the final straw. I thought he would live until they could learn what the problem was.