Six year old Nora Lawton has Bardet-Biedl Syndrome
(BBS), a rare genetic disease that affects many parts of the body. BBS is officially a “rare disease” affecting approximately 1 in 250,000 people around the world. Based on general population trends, there are likely about 3,000 people in the United States and Canada living with BBS.
Visual abnormalities usually become progressively worse and may ultimately result in blindness. Kidney abnormalities may progress to cause life-threatening complications. Learning difficulties are common, due in part to vision loss.
Night blindness is usually evident by age seven to eight years and the average age of legal blindness is 15½ years.
There is no cure for BBS.
Living with a genetic or rare disease can impact the daily lives of patients and families.
Children with BBS benefit greatly from therapies like physical therapy, occupational therapy, speech therapy and vision services.
Meet Nora Lawton’s Family
- Substitute teacher in Burlington & Waterford School District;
Paris & Yorkville Schools
- Active member of Burlington Jaycees for 10 years
- Past President & office positions of Burlington Jaycees
- Director of Safety Town for three years
- Burlington resident for 25 years
- Former local, small business owner
- Now in a plumbing apprenticeship with Just Service, Inc.
- Student at Cooper Elementary School
- Daisy Scout Troop #10331
The proceeds raised by Through Nora’s Eyes: The Hope Foundation for Nora Lawton will support Nora Lawton and her family in their frequent trips to the Marshfield Clinic and related medical costs. Proceeds will also help Nora as BBS develops, for example, Nora will require teachers that are specially trained and certified. A portion of the proceeds will go to the BBS Family Association (link to their website) to help connect families and share information on research, treatment, and therapies for BBS. Your generosity can help offer the emotional and financial support BBS families need as they embark on this journey.