- Annabelle Bozarth
Regular readers of this blog will recall the fun “Mad Hatter” Tea Party held in 2009 to honor our LH/HG neighbor Annabelle Bozarth and to raise funds for research on Morquio syndrome, a disease with which Annabelle was diagnosed at six months of age.
Well, it’s time to mark your calendars and get your zany hats ready for another party, coming this June!
More than 250 DC-metro-area children and adults will join Annabelle and her family to celebrate life at an Alice-in-Wonderland-themed “Mad Hatter” Tea Party on Sunday, June 5, 2011, from 3:00–5:30 PM at the Windsor Room in Alexandria.
Event proceeds will benefit the National MPS Society to fund Morquio research and development of treatment for Annabelle and others like her around the world.
The Mad Hatter event will be a bright, cheerful, and fun garden tea party—an exciting celebration of life for all ages! Guests will enjoy a variety of family entertainment including garden-tea-party portraits, Alice-in-Wonderland face painting, and a silent auction. Mr. Knick Knack! will provide the music, promising a memorable show of rousing sing-alongs and energetic dance.
“It’s our hope that the Alexandria community will support this family activity with the potential to impact children worldwide,” says Annabelle’s mother, Stephanie. “I look forward to watching Annabelle dance and sing to Mr. Knick Knack! with her friends and neighbors.”
Annabelle was diagnosed with Morquio syndrome at six months and by age two had already undergone one major cervical surgery to prevent spinal cord damage caused by this terrible disease. Last summer she endured yet another major operation: double hip-replacement surgery and the insertion of bilateral knee plates. Her recovery from this surgery required a full-body cast for six weeks, followed by six months of intensive physical therapy in order for her to learn to walk again.
Following this surgery, Annabelle was diagnosed with mild to moderate hearing loss. Despite these obstacles, “Annabelle is a happy four year old, with bones very different than ours,” says Stephanie. “This past year was challenging for Annabelle with lots of pain and adjustments to the damage caused by Morquio. Nonetheless, she has shown amazing courage and resilience.”
Morquio syndrome is a degenerative disease causing severe bone abnormalities and organ damage. It is caused when a child is missing an enzyme essential in cutting up mucopolysaccharide (MPS), which is normally used in developing healthy bones and cartilage. Physical growth slows and often stops in affected children at eight years old. Skeletal abnormalities can include a bell-shaped chest, a flattening or curvature of the spine, shortened long bones, and abnormal growth of the hips, knees, ankles, and wrists. The damage from missing this enzyme also causes hearing loss, corneal cloudiness, pulmonary difficulties, and heart valve damage. Children with more severe cases may not live beyond their twenties. Currently, 370 patients are registered with this syndrome and thousands worldwide are estimated to carry the degenerate gene, but are not yet diagnosed.
“With limited awareness of this syndrome, funding is inadequate to move research for treatment forward. Our goal is to raise $40,000 to support Morquio treatment research. There is no cure; however, with treatment there is potential to stop the disease progression in our daughter and provide relief to her daily challenges,” says Stephanie.
The National MPS Society is a 501(3) c nonprofit organization created to find cures for MPS and other related diseases. They provide hope and support for affected individuals and their families through research, advocacy, and awareness of these devastating diseases.
For more information about the event or to make a tax-deducible donation to support The National MPS Society, please visit the “Mad Hatter” event website.
To learn more about the Bozarths’ website to learn more about Belle and her family.
