Mom Of Two Daughters With Albinism Explains Their Unbreakable Bond

Becky (PA Real Life/Collect)

Still, with no social media support back then to put her in touch with like-minded families, and little in the way of signposting to charities, Jo did find the first year after diagnosis a struggle.

As albinism is relatively rare, she found her life became a haze of hospital appointments with various different specialists, rather than just having one doctor to oversee everything.

But finally, when Jess was 14 months old, a turning point came when Jo discovered The Albinism Fellowship.

Jess and Becky (PA Real Life/Oliver Dixon)

“They got in touch with me, and that was the first time someone had said, 'It's going to be okay,'" she recalled. “I was able to meet other families and hear about other children like Jess, who had gone on to do amazing things without being held back by their condition.

“Almost right away, I decided to become involved myself. I never wanted another parent to go through what I had, and so now I want to share my girls' lives as a way of offering hope."

Eventually coming to terms with Jess' diagnosis, Jo felt able to try for the second child she had always wanted.

During her pregnancy, there was no way of testing if her unborn baby had albinism, and Jo opted not to find out her baby's gender before the birth.

Becky arrived on October 10, 2010, and Jo recalled: “I actually found out she had albinism first because my husband said she had the same white hair as Jess before anybody would tell me if I had a girl or a boy, so we knew straight away."

Becky's official diagnosis came at four weeks old, again via an ophthalmologist.

“Having two children with the condition meant they would be support and understanding for each other as they learn to navigate the world. This is how we raised the girls and they have proved to be a great support for one another," added Jo.

Now, both girls have the same level of vision, though Becky is farsighted, while Jess is nearsighted.

Both girls walk with white sticks and both are excelling at school, where they use iPads and enlarged print books to help them learn. They also have a mobility support dog called Viking, who is trained by Guide Dogs UK helps Becky walk in every day to her primary school, where she will be in year four in September.

Jess (PA Real Life/Collect)

And amazingly, Jess, whose field of vision is around as far as the end of her arm, has learnt every single step of her journey to secondary school, where she will be in year eight when she returns in September, so she can walk there independently with her friends.

“I had nightmares about that for years, but she is very safe and knows exactly where she is going," said Jo. “I can't believe we've got to this point. I never thought I'd see that day, but it is so important for Jess to have that independence."

With no pigment in their skin, the sisters also burn very easily, meaning sun safety is paramount – especially during the school summer holidays.

Jo explained: “They don't have to stay indoors but they have to wear prescription sun cream with a factor of 50 plus. As long as they are topped up with sun cream, they are okay.

“They wear that every day from March to November, unless it's going to be freezing cold because otherwise, they will burn within minutes of exposure due to having no pigment.

“They also have to take vitamin D supplements and top them up during the winter months."

And Jo added that it does require extra planning if booking the girls into a holiday camp or activity day.

She continued: “I will have to phone up and have a long conversation about their needs, and about whether they are okay with visual impairment before I can book them on.

“With holidays, we go where we want to go, but I have to make sure where we are staying has a form of air conditioning so there's somewhere they can have some downtime where it's cooler."

She added: “When swimming, they will wear full UV swimsuits. We would not just go somewhere they could play in the water all day, it would be for an hour in the morning and an hour in the afternoon.

“We do have to put more thinking and planning into it, but the girls would never notice. We make sure their lives are the same as everyone else's but just do things a bit differently in the background."

By speaking out, Jo wants to both give other parents hope, and thank Jeans for Genes Day, the annual fundraising campaign for Genetic Disorders UK, which takes place from Monday 16 to Friday 20 September.

Every year, monies raised through the campaign go toward grants for projects that aim to transform the lives of children living with genetic disorders.

This year, The Albinism Fellowship is a grant charity, and will receive money to go toward 12 regional family events, giving children with the condition a chance to meet one another

Jo said: “The Albinism Fellowship is a tiny charity, all run by volunteers, so grants like the one from Jeans for Genes Day are absolutely priceless. They go toward vital support like family weekend conferences, bursaries, literature and support for new parents."

Jo with her daughters Jess and Becky (PA Real Life/Collect)

Jo also wants to express her pride at Jess and Becky, who have formed an unbreakable bond, and often help one another out with tips and advice on how to navigate life with albinism.

She concluded: “They are incredibly close. They'll often walk down the street holding hands, or Jess will give Becky a piggyback.

“Like any other siblings, they do squabble, but they also have such a strong bond and I don't want having a visual impairment to stop either of them living their lives to the full."

For information, visit www.jeansforgenesday.org and www.albinism.org.uk