Hello Everyone
My name is Deandre Burroughs and I am 3 years old. I have a rare condition called Warrenburg Syndrome Type IV. I was born deaf. I was also diagnosed with Hirschsprung’s disease, a condition that caused me severe constipation. I had surgery to correct this condition and was on an ostomy bag for about 7 months. I now have had the ostomy bag removed. I am the second youngest of 7 children. My mother and father have tried their hardest to obtain hearing aids. I also have many doctor’s appointments to attend, but sometimes it is difficult because the special care I need is far from my home.
What is Waardenburg syndrome?
Waardenburg syndrome is a genetic condition that causes changes to the coloring (pigmentation) of your hair, eyes and skin and can cause hearing loss in some people. Six genetic mutations cause the four types of Waardenburg syndrome, with each type categorized by its unique symptoms.
What are the symptoms of Waardenburg syndrome?
Symptoms of Waardenburg syndrome affect each person differently and can vary among members of the same family. Symptoms of the condition may affect your hearing and the coloring (pigmentation) of your hair, skin and eyes. Other symptoms are seen in specific types of Waardenburg syndrome, such as widely spaced eyes in type I, abnormalities of your arms and hands in type III and Hirschsprung disease (a gastrointestinal disorder) in type IV.
Hearing loss
Some people diagnosed with Waardenburg syndrome may have moderate to severe hearing loss in one or both ears. Depending on the type, some people might not have their hearing affected. Hearing loss is present at birth (congenital).
Pigmentation symptoms
Waardenburg syndrome causes changes to your hair, skin and eye color (pigmentation). These changes include:
Pale, blue eye color.
Eyes that are two different colors.
Segments of your iris (the part of your eyes with color) are two different colors (heterochromia irides).
Patch of white hair, usually above your forehead (forelock).
Hair turns gray at a young age.
Light patches of skin (congenital leukoderma) that aren’t the same color as the rest of your body.
What are the types of Waardenburg syndrome?
There are four types of Waardenburg syndrome. Providers diagnose each type based on your symptoms. These include:
Type I: Wide-spaced eyes and a broad nasal bridge.
Type II: Moderate to severe hearing loss.
Type III (Klein-Waardenburg syndrome): Hearing loss, skin pigmentation changes and bone growth abnormalities of your hands and arms.
Type IV (Waardenburg-Shah syndrome): All symptoms of Waardenburg syndrome and symptoms of Hirschsprung disease, which includes severe constipation or intestinal blockages.
The most common types of Waardenburg syndrome are types I and II. Types III and IV are rare.
We are trying to raise funds for him to obtain hearing aids and other medical expenses. Also trying to get a vehicle so he can get the proper medical care he needs.
Hearing aids can cost between 3,000 to 10,000 dollars.
