An Arizona family moved from Gilbert, Arizona, to Presque Isle, Maine, after knowing that their 18-month-old twin boys had albinism.
Ally McNallen and her husband Ryan who have a family of nine took this decision to protect their sons from the sun’s damaging ultra-violet rays.
“When we found out the twins had albinism we wanted them to have a good childhood that wasn’t limited,” Ally, 31, told SWNS TV.
“In Arizona, the UV index is so high. In Maine, I don’t have to worry about them as much as I would have to do in Arizona,”
The twins, Aldridge and Argon, were only 7 months old when they were diagnosed first. Ally said that she and her husband started noticing twins’ eyes were making repetitive, uncontrolled movements.
They decided to have their sons undergo genetic testing, which ultimately confirmed they had oculocutaneous albinism type 1B.
According to the Genetic and Rare Disease Information Center, this type of albinism is “characterized by skin and hair hypopigmentation, nystagmus, reduced iris and retinal pigment and misrouting of the optic nerves” — though all albinism is “a group of inherited disorders that results in little or no production of the pigment melanin.”
Ally told SWSN: “At 18 months they don’t have too many issues except with their eyes. People with albinism often have a blurry vision as they have an underdeveloped retina,”
“We won’t know the level of visual impairment that the twins have until they get a little older, but they still have nystagmus and their heads move in certain ways to try and see the clearest they can.”
“Our oldest is eleven and she went online and began to educate herself about albinism,”
“She was great at explaining it and breaking it down to our other kids.”
“I think about the twins and their future a lot and I just hope when they start school and grow that they will get all the support they need,” she added.
“They are so beautiful and I want to do the best for them, which is why my husband and I chose to move our family here to Maine.”