Family moves almost 5,000 kms to ensure twin toddlers with albinism thrive
Ally and Ryan McNallen are parents to seven gorgeous children and have just moved their gang close to 5,000 kms – from the desert to the mountains – to ensure their toddler twins live the happiest and healthiest lives they can.
Escaping the sun
Twins Aldridge and Argon are 18 months old and were diagnosed with albinism when they were seven months old.
So what is albinism and how common is it, you might be wondering?
“Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes,” the Albinism Fellowship of Australia explains.
Albinism occurs across all racial and ethnic groups. In Australia, around one in 17,000 people have some type of albinism, while in other parts of the world albinism rates can be as high as one in 700.
“Most children with albinism are born to parents who have normal hair and eye colour for their ethnic backgrounds. Both parents must also carry the recessive gene to have child with albinism.”
Ally and Ryan’s little boys’ albinism has affected their vision and their skin is also particularly sensitive to the sun.
In fact, they were so concerned about their boys’ health and exposure to Arizona’s high UV radiation, that they decided to take their online marketing business (which they run from home) and their brood and head almost 5,000 kilometres across the country to Maine, which is a more moderate UV zone.
Ally says that there are still challenges from UV exposure, but that the move has made things much less fraught.
“Right now it’s summer so I just try to protect the boys in SPF clothing, hats and sunglasses when they’re outside. And I limit their outside time to 45 minutes,” she told Yahoo News.
“In Maine I don’t have to worry about them as much as I would have to do in Arizona.”
A team effort
Ally and Ryan are also mum and dad to 11-year-old Maliah, seven-year-old Addison, six-year-old Nolan, four-year-old Emmeline, and two-year-old Benton. The couple says that the whole family is learning about albinism together – and spreading the word to help others understand this condition too.
“We were open and transparent with our kids about the twins‘ condition. Our oldest is eleven and she went online and began to educate herself about albinism,” Ally explained.
“A few weeks ago a little girl asked what was wrong with them. That was a great opportunity for my daughter to educate someone else about albinism.”
