Parents Helping Parents with Children with Albinism
WHAT
IS ALBINISM?
Dictionary
Of Terms
Types Of Albinism
Causes Of Albinism
New Research
DOCTORS/PROGRAMS
Pediatricians
Pediatric Ophthalmologists
Pediatric Dermatologists
Genetic Counselors
Organizations & Programs
SPECIAL
NEEDS
Eyes and Glasses
Sun Screen
Hats and Clothing
Accessories
Assistant Technology
MYTHS
vs. FACTS
Common Misconceptions
Other Families Stories
Fairy Tales & Legends
Modern Movies & Media
Role Models & Famous People
FUTURE
Public & Private Schools
Books For All Ages
Teasing and Negative Issues
Skin Care and Make-up
Driving
Living An Independent Life
Relationship Challenges
Parenting Concerns
SARA LOGO T-SHIRTS AND MERCHANDISE
SOURCES
This site was created by parents to help other parents who have children that were diagnosed with albinism. It contains practical information we have found since our second daughter Sara was born. We have included medical facts, helpful resources, advice, tips and great ideas we have come across from our personal experiences and from other families. We knew if the information was important to us then it would hopefully be helpful to other families as well. We went through an emotional roller coaster after receiving Sara's diagnosis. Our feelings of helplessness were due largely to the limited about of information our family was given and the not knowing what to do for her. We hope to help other families by answering the most important question... What can we do for our child? With your help we can continue to add new things.
OUR STORY: Our second daughter Sara was born on September 9, 2001. When she was less than 2-days old (on September 11th) a doctor announced, "Yes. She's definitely blind." I felt like I was just hit in the stomach. As the world around us was in chaos and despair, so was our family. Then we heard the doctor use words like Albinism, Oculocutaneous, Nystagmus and Melanin. We had no idea what the doctor was talking about or what to do. We had so many questions. Was our new baby daughter going to see, to read, was she going to be able to drive or have an independent life of her own?
Now we know the answer is YES. She does have a lot of vision though she is legally blind (20/220). She reads, draws and writes, though needs to be very close to the pages. She loves to watch television and use the computer though she needs to get very close to the screen. Her favorites shows are Dora and Cinderella. We'll see about the driving part, but she is definitely VERY independent.
Sara is so extraordinary. She has no limits to what she can do. The best thing we heard is when we went to a Pediatric Ophthalmologist, Dr. Creig Hoyt, and he said to us, "The vision she was born with, will be the worst her vision will ever be. It will only get better!"
She does wear glasses. They don't help her the way traditional glasses help others. Her glasses help to slow down the movement of her eyes which in turn will improve her vision. She also has transition lenses that get darker the brighter it is to protect her eyes from the bright light and glare. She started wearing prescription glasses at 3 months old. She puts on sun block and a hat before going outside. We have a 10 minute rule. If we are outside (even in the shade) for more than 10 minutes then she needs her sun block and blue princess hat.
She is incredibly beautiful. She has pretty blue eyes and white hair, which she is very proud of. She also has a smile that lights up the whole world.
There are about 18,000 people of all races with albinism in the United States. They have independent lives, read printed books, have careers, get married, have children and are happy. Many of them have their driver's license.
If you have any additional information, questions, comments or can donate anything to keep this site going please contact SARA Foundation. We hope this site has been helpful and THANKS! :-)
Sara 1 year old
taken by Rick Guidotti
Positive Exposure 07/02
Sara 2 years old
Sara 3 years old
Christmas 2005