Welcome!                                                                             Thank you for visiting our new Morquio Syndrome fundraising and awareness site. As parents of a child diagnosed with Morquio Syndrome, we have made it our personal goal to raise awareness about Morquio Syndrome and raise funds to make treatment and/or a cure a reality.                                                                Sincerely, Stephanie and Austin Bozarth

Annabelle Bozarth, 2 1/2 years old. She recently was in a halo following a spinal decompression and fusion surgery.  The surgery was neccessity because her spinal cord was impinged by her vertebra This condition is common amongst people with Morquio Syndrome.  Usually the surgery occures closer to age 8 however due to our close medical care and the progression of her morquio syndrome the surgery was necessary to prevent potential spinal cord damage or death.  The halo gives the vertebra time to heal which usually takes 3 months.  Annabelle has recovered from the surgery and is doing great.

Following definition is from National Organization of Rare Diseases www.rarediseases.org

"Morquio Syndrome (mucopolysacchridosis type IV; MPS IV) is a mucopolysacchride storage disease that exist in two forms (Morquio A and B) and occurs because of a deficiency of the enzymes n-acetyl-galactosamine-6-sulfatase and beta-galactosidase, respectively. A deficiency of either enzyme leads to a build of mucopolysaccharides in the body, abnormal skeletal development, and additional symptoms. In most cases, people with Morquio Syndrome have normal intelligence. The clinical features of MPS IV-B are usually fewer and milder than associated with MPS IV-A. Symptoms may include growth retardation, a prominent lower face, an abnormally short neck, knees that are abnormally close together (knock knees), flat feet, abnormal sideways and front to back or side to side curvature of the spine, abnormal development of the growing ends of the long bones, and/or a prominent breast bone.  Hearing loss, weakness of legs, and/or additional abnormalities may occur.

The mucopolysacchridoses (MPS) are a group of inherited lysosomal storage  disorders. Lysosomes function as primary digestive units within cells. Enzymes within lysosomes break down or digest particular nutrients, such as certain carbohydrates and fats. In individuals with MPS disorders, deficiency or malfunction of a particular lysosomal enzymes leads to an abnormal accumulation of certain complex carbohydrates in the arteries, skeleton, eyes, joints, ears, skin, and/or teeth. These accumulations may also be found in the respiratory system, liver, spleen, central nervous system, blood, and bone marrow. This accumulation eventually causes progressive damage to cells, tissues, and various organ systems of the body".

If you are interested in learning more or joining our efforts to raise funds, awareness, or looking for support, please feel free to contact me directly at stephbozarth@yahoo.com

In brief, you should know the following about us: our efforts to raise awareness and funds began soon after our daughter was diagnosed with Morquio Syndrome at 6 months old. We currently direct all our monetary fundraising to the Carol Ann Foundation/ International Morquio Organization (www.morquio.com) and The National MPS Society (www.mpssociety.org).  The  Both foundations are committed to research and supporting families dealing with MPS IV.  The National MPS society supports all MPS/ML research and families however funds can be earmarked specifically for Morquio Syndrome / MPS IV A to honor our daughter.