Both our kids have albinism, our diagnosis story may sound a little similar. My husband and I have brown and hazel eyes and brown hair. My son was born, fair, blond/white haired and blue eyed vision seems fine but eventually we noticed he was photophobic. My daughter was born 3 1/2 years later, goldish blond with red tint, bit darker skin. Developed nystagmus about 4-5 weeks old. Eye doctor misdiagnosed her as having just nystagmus. switched doctors she is diagnosed with albinism. I had a strong assumption that my son also had it and he did. He had a blond fundus but only had pigment on his fovea which is why his vision is better! Our eye doctor told us it was a genotype/phenotype thing.
My son can have slight nystagmus, is more photophobic which is described as painful, was left eye dominate and saw double when reading which was corrected with vision therapy, skin and hair is lighter and did not start getting a very light tan until he was 8, his vision is best corrected to 20/25. My daughter is a bit darker in skin and hair, always got a very slight tan, nystagmus is much worse, photophobia not as bad as brothers, poor depth perception, fovea and optic nerve affected, uses a cane as necessary, stronger prescription for glasses best corrected is usually about 20/40 or a bit higher but can fluctuate.
Albinism can express itself differently, with varying visual problems and/or coloring. I do know of one family;the parents carry 2 types of albinism and the children's albinism is expressed quite differently. Both of my kids were diagnosed by them checking their retinas for pigment. We did have to find a eye doctor who was familiar with different forms of albinism for the initial diagnosis. Because you can have albinism and have good acuity or no nystagmus, or even brown hair and brown eyes. I believe my kids most likely have OCA1b or OCA2. (sorry my replies never stay formatted)