An Arizona family with albino twins relocated to a state thousands of miles away to better protect their sun-sensitive children from harmful UV rays.
Ally and Ryan McNallen moved to Presque Isle, Maine with their twin 18-month-old sons — Aldridge and Argon — and their five other children in February. Their new home is located nearly 3,000 miles away from their former home in Gilbert, Ariz.
“When we found out the twins had albinism we wanted them to have a good childhood that wasn’t limited. In Arizona, the UV index is so high,” Ally, 31, told the U.K.-based outlet SWNS.
“My husband and I work from home so moving jobs wasn’t an issue and we just thought Maine would be a nicer life for our kids with special needs,” she added. “It’s been a big difference.”
Maine is considered to be a moderate UV zone, according to SWNS.
“In Maine, I don’t have to worry about them as much as I would have to do in Arizona,” Ally said, noting her identical twins are always protected with hats, sunglasses, SPF and protective clothing when outside. However, the mom of seven still caps their time outdoors to 45 minutes.
The twins were diagnosed with albinism — “a group of inherited disorders that results in little or no production of the pigment melanin,” according to the Genetic and Rare Diseases Information Center — when they were seven months old.
Their diagnosis came after Ally and her husband Ryan, 35, noticed the boys were suffering from nystagmus, a condition that causes the eyes to make repetitive, uncontrolled movements.
Genetic testing confirmed their diagnosis of oculocutaneous albinism type 1B, which is “characterized by skin and hair hypopigmentation, nystagmus, reduced iris and retinal pigment and misrouting of the optic nerves,” per the Genetic and Rare Disease Information Center.
“At 18 months they don’t have too many issues except with their eyes. People with albinism often have blurry vision as they have an underdeveloped retina," the mom said. "Pigment plays a big part in how our eyes handle light and people with albinism don’t have that."
“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," she added.
Ally said learning about albinism has been a “family journey” with her and Ryan’s five other children, Maliah, 11, Addison, 7, Nolan, 6, Emmeline, 4 and Benton, 2.
“We were open and transparent with our kids about the twins’ condition,” she said.
Roughly one in 18,000 to 20,000 people in the U.S. have some form of albinism, an inherited genetic condition, according to the National Organization for Albinism and Hypopigmentation.