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RILEY'S STory with albinism

*The following story was shared with us by Riley's grandmother, Susan

In the fall of 2012 my grandson Riley James was born. Everything went normally and the nurses at the hospital exclaimed how rare it was to see a baby that had such white hair. This was just the beginning of our family’s journey to the eventual diagnosis for Riley of Albinism.

Our Journey

At Riley’s two- month checkup the doctor told my daughter Meghan that she believed there was something wrong with Riley’s eyes. The doctor thought Riley might have Nystagmus (an involuntary action of the eyes which makes them shake and “dance”) and encouraged Meghan to take Riley to see a pediatric ophthalmologist. We had noticed at home that Riley could not track objects you put in front of him and he didn’t make eye contact. 

We all went to the appointment at Mary Bridge Children’s Hospital a month later in Tacoma and the pediatric ophthalmologist we saw believed Riley had Optic Nerve Hypoplasia… a condition where the optic nerves in the eyes are not fully formed. He believed at this appointment that Riley was legally blind. This led to appointments with an endocrinologist and an MRI as well as other visual tests which were hard for a toddler to endure as this condition often affects the pituitary gland and other endocrine systems.  A second appointment with a Pediatric Ophthalmologist at Children’s Hospital in Seattle five months later delivered the actual diagnosis of Albinism.  Albinism is an autosomal recessive gene. This means both parents are carriers and there is a 1 in 4 chance that their children will have albinism. One in 70 people carry the albinism gene. The incidence worldwide of having albinism is 1 in 17,000. People upon hearing the word Albinism or Albino immediately think of white skin and hair, but the hardest part of Albinism is how it affects the individual’s sight.

The Biggest Challenges We Faced

The biggest challenge has been for Meghan, being a single parent on her own with a visually impaired child. There are limited programs to help with medical services and early intervention. We were lucky to finally get Riley enrolled in a Birth to Three Program where a vision teacher came to the house once a week and worked with Riley. He made huge strides with these services.  From the beginning my daughter Meghan accepted things as they were and she has been steadfast in supporting her son. Riley’s challenges lie in the lack of pigment in his eyes which makes it difficult to see, as well as to be in sunlight, and they live in Arizona. 

Where We Are Now

Riley is five years old now and is in pre-K. He has done well with milestones and he now has transition lenses which help with things he never would have been able to do like play soccer. He will probably need some accommodations when he gets into Kindergarten, such as being positioned at the front of the room, or having larger print curriculum. Where frequent visits with the ophthalmologist and all of the machines were once scary, Riley now takes it in stride.  We don’t know what the future holds, but are very optimistic for Riley.