Suzanne's Page

This is me at Niagara Falls

These pages are dedicated to my 8 year old son Jeremy

What is Duchenne Muscular Dystrophy?

The muscular dystrophies are a group of muscle diseases which have three features in common: they are hereditary; they are progressive; and each causes a characteristic, selective pattern of weakness .

DMD affects only males, with rare exceptions. Unless a boy with DMD is known to be at risk because of his family history, he is unlikely to be diagnosed before the age of 2 or 3 years. Most boys with DMD walk alone at a later age than average. Then the parents are likely to be worried about something unusual in the way he walks, about frequent falling or about difficulty rising from the ground or difficulty going up steps. Less often, concern arises because of intellectual handicap ("mental retardation"). Although intellectual handicap affects only a minority of boys with DMD, it is more frequent than in other children.

At this time there is no cure for DMD. The worsening of disability can be slowed by such measures as physiotheraphy, but it cannot be stopped. On average, use of a wheelchair proceeds from occasional use at about age 9 years to almost total dependence by the early teens, but there is a range of severity to either side of this.

As the ability to walk is lost, the function of the hands and arms becomes increasingly important in determining the affected person's abilities. Most affected people survive into their twenties. A small minority survive only to their late teens, another small number to more than 30 years of age.

What is Autism?

Autism is a developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects functioning of the brain, autism and its associated behaviors are reported to occur in as many as one in five hundred individuals.

Autism is four times more prevalent in boys than girls and knows no racial, ethnic or social boundaries. Family income, lifestyle and educational levels do not affect the chance of autism's occurrence.

Autism interferes with the normal development of the brain in the areas of reasoning, social interaction and communication skills. Children and adults with autism typically have deficiencies in verbal and non-verbal communication, social interactions and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. They may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and resist any changes in routines. In some cases, aggressive and/or self-injurious behavior may be present.

It is conservatively estimated that nearly 400,000 people in the U.S. today have some form of autism. It's prevalence rate now places it as the third most common developmental disability - more common than Down's syndrome. Yet the majority of the public, including many professionals in the medical, educational, and vocational fields are still unaware of how autism affects people and how to work effectively with individuals with autism.

How Our Lives Were and Have Been Affected

Jeremy was born on May 8, 1991, at St. Clair Hospital in Pittsburgh, PA. He was the picture of perfect health. Little did we know that when a routine sample of blood was taken from him for the Supplemantal Newborn Screenings, that our lives would change 6 weeks later.

We got a call 2 weeks after we had come home that Jeremy's CPK blood test had come back elevated. We then took him for a second batch of bloodwork to prove or disprove the first results. On July 4th his doctor called me and gave me the news that Jeremy's CPK had come back elevated again.

On August 4th at Children's Hospital in Pittsburgh, Jeremy had a muscle biopsy done to determine which type of MD he had. We got the results back and they confirmed Duchenne Muscular Dystrophy.

More of the story to come soon! (sorry)

DMD-AUTISM-FRIENDS related links

Jeremy's June 4th Newspaper article

THIS DMD FORUM MEMBERS WEBRING SITE IS OWNED BY Suzanne . WANT TO JOIN THE DMD FORUM MEMBERS WEBRING?
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