What is Dystonia?
What is Dopa-Responsive Dystonia (DRD)?
What are the symptoms?
What is CHAD?
What are Breanna’s Characteristics?
Is this hereditary?
Does this disorder affect her mentally?
How much are you trying to raise?
What will this proceeds be used for?

What is Dystonia? top
Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords.
If dystonia causes any type of impairment, it is because muscle contractions interfere with normal function. Features such as cognition, strength, and the senses, including vision and hearing are normal. While dystonia is not fatal, it is a chronic disorder and prognosis is difficult to predict.
It is the third most common movement disorder after Parkinson's Disease and Tremor, affecting more than 300,000 people in North America. Dystonia does not discriminate - affecting all races and ethnic groups.

What is Dopa-Responsive Dystonia (DRD)? top
The term "DRD" is applied to several disorders characterized by stiff movement, abnormal gait, and sometimes abnormal mouth movements. These abnormalities are often severe, especially in the afternoon. It can be considered a form of childhood "Parkinson disease". Because it is a rare disease, patients with DRD have often been misdiagnosed as having Cerebral Palsy.
DRD is caused by an inadequate supply of dopamine to the brain. The disease can be treated successfully with dopa therapy. Other forms of dystonia may not respond to dopa therapy, but may be treated with other therapies.

What are the symptoms? top
Patients who have DRD may have one or more of the following symptoms:

• Developmental motor delay, .i.e. slowness in walking and other motor skills;
• Tremor associated with movement, particularly in hands and arms;
• Muscle stiffness and rigidity causing balance difficulties;
• Abnormal tongue and mouth movements;
• Parkinson symptoms, including a "mask-like" appearance in which facial muscles are slow to respond to changes in emotion;
• Worsening of all symptoms later in the afternoon;
• Onset of symptoms in childhood.
  

What is CHAD? top
The Children’s Hospital at Dartmouth is part of the Dartmouth-Hitchcock Medical Center, located in New Hampshire. Recognized in 1992 as a “children’s hospital within a hospital" by the National Association of Children’s Hospitals and Related Institutions, Inc. (NACHRI), CHaD is one of 96 children’s hospitals in the United States providing care specifically focused for children.

What are Breanna’s Characteristics? top
Breanna is now five-years-old. She is still not able to walk, crawl, sit up by herself, rollover, nor conduct even the simple task of grabbing an object.

Is this hereditary? top
We know that dystonia is a genetic disorder, but in Breanna’s case we are not sure if it is hereditary. There is no history of dystonia, which we know of, on either side of our families.

Does this disorder affect her mentally? top
No, Breanna is very intelligent. However, she is affected emotionally because Dystonia traps a normal cognitive mind into a body that can’t obey the commands being relayed by your brain.

How much are you trying to raise? top
We are fortunate to have medical insurance but the coverage is limited to certain parameters. In order to give Breanna access to quality care, the care she needs and deserves with this rare disease, requires funds beyond those parameters. In addition, we have been taking Breanna to a doctor of homeopathy, which is not covered under insurance. The shear volume of co-pays and "out of pocket" expenses is substantial.

Our goal for the upcoming fundraiser is $15,000.

What will this proceeds be used for? top
This money will be used to pay for:

Existing accumulated medical expenses resulting from doctor/hospital visit (sometimes 3-4 times a week), medication, and tests.

Continued travel expenses to take Breanna to specialists out of state.

Anticipated medical expenses not covered by insurance, physical therapies, and naturopathic medicines not covered by insurance.

Uncovered durable medical equipment (such as wheel chairs, braces, prosthetics).