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Mom Of Two Daughters With Albinism Explains Their Unbreakable Bond

Jess and Becky (PA Real Life/Oliver Dixon)

A proud mom has spoken candidly about life with two daughters with albinism, saying she is glad they both have the condition so that they can support one another.


As soon as her eldest Jess, now 12, was born, Jo Bennett, 44, knew from her shock of bright white hair, and how she would never open her eyes in sunlight, that something was the matter.

But it was not until the tot was 17 weeks old that she was officially diagnosed with oculocutaneous albinism – a genetic condition affecting melanin production and meaning that, in Jess' case, she has no pigment whatsoever in her skin, eyes or hair.

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

What followed was an incredibly tough year, where Jo, of Nottingham, went through a grieving process for “the child she thought she'd have."

In time, after genetic testing showed that any future children had a one in four chance of also having the lifelong condition, she fell pregnant again, eventually welcoming Becky, now eight, to the world.

Like her big sister, Becky also has oculocutaneous albinism, which has left both girls severely visually impaired – but Jo poignantly admitted she is happy her girls can share in their experiences.

What is albinism?

  • Albinism affects the production of melanin, the pigment that colors skin, hair and eyes.
  • It's a lifelong condition, but it doesn't get worse over time.
  • People with albinism have a reduced amount of melanin, or no melanin at all.
  • This can affect their coloring and their eyesight.

She explained: “My husband and I had always wanted more than one child.

“Genetic testing showed any future children would have a 1 in 4 chance of also having albinism, but by the time we were ready to try again, I had gone through the grieving process and seen that Jess could absolutely live a full and normal life.

“I never admitted this before I gave birth to Becky, but if I could have picked an outcome, I'd have wanted a girl with albinism, which is exactly what she is. I know it sounds weird to say you want your child to have a genetic disability, but that way, they would have each other."

Jess and Becky (PA Real Life/Collect)

Jo, who co-owns a care company, told of how there was no signs of Jess' albinism picked up during any of her routine pregnancy appointments, and scans showed no abnormalities.

But the moment she was born at Nottingham's City Hospital in July 2007, medics seemed confused by her shock of bright white hair.

“I remember knowing something was up. My husband and I are both dark-haired, so I was confused about where this white hair had come from," she explained.

Jess and Becky (PA Real Life/Collect)

In the weeks that followed, Jo noticed Jess had other peculiar habits, such as refusing to open her eyes in the daylight, or screaming whenever she went outside.

She continued: “She'd only ever open her eyes when it was dark. I did think it was strange, but being my first child, I had nothing to compare it to and didn't know whether it was just something babies did.

“I also began to notice that, whenever we went outside for a walk, she would scream and scream. It got to the point where I dreaded going out."

She added: “I remember once, getting halfway down the road and just thinking, 'I can't do this' and heading home. As soon as we got inside, out of the sunlight, she stopped crying."

Now, with Jess' diagnosis, Jo knows that she was screaming in discomfort due to photosensitivity – an extreme sensitivity to light due to the lack of pigment in her eyes – which is a part of the condition.

She explained: “Where Jess' eyes have no pigment in them, she is incredibly sensitive to the light. Both she and Becky wear sunglasses whenever they go out."

Jess and Becky (PA Real Life/Oliver Dixon)

Jo added: “I didn't know it back then, but that's why she was screaming. She would be in her pram, facing up at a bright blue sky – of course it was horrible for her."

Eventually, Jo was referred for an appointment with an ophthalmologist – a doctor specializing in eye care – and Jess's condition was diagnosed there, when she was 17 weeks old.

According to the charity The Albinism Fellowship, which have been a great support to the family, it is thought that albinism affects one in every 17,000 people in the UK.

Becky (PA Real Life/Collect)

After breaking the news, medics registered Jess as partially sighted – which was changed to severely visually impaired when she turned five.

Speaking of the emotional impact, Jo said: “Along with being partially sighted comes all the things Jess will never do, like drive a car. I remember sobbing at the thought that she could never fly a plane, as I had wanted to be a pilot so badly when I was little.

“It's funny as she has never expressed an interest in doing that anyway, but that's where my mind went."

Jo continued: “After a diagnosis like this, you do go through a grieving process. Two of my friends were expecting around the same time as me.

“When this was all happening, I remember reading an analogy that fitted perfectly. It was like I'd been going on a group holiday to Rome, but at the last minute, I'd ended up in Amsterdam instead.

“At first, you want to be in Rome with everyone else, as that's what you'd planned for. But over time, you realize that Amsterdam is amazing too. It's not where you thought you'd be, but that doesn't make it any less wonderful."

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

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When you know your kids backwards and forwards, this is the best tool in your arsenal.

Getting our kids to listen to us is not always the easiest of tasks. They're willful and stubborn, but we've got a mighty weapon they are rarely prepared for: reverse psychology. Getting them to convince themselves to want to do something against their own initial intentions takes some work and a whole lot of creativity, but a little sneaky manipulation goes a long way. Here are some clever parents' tricks that are definitely worth taking notes on.

Redditor u/LeanderD Asks:

Parents of reddit, what's your best example of reversed psychology on your kids that actually worked?

He Floated His Idea Through A Back Channel

Giphy

Wanted to name my boat. Anything I would think of was dismissed as stupid by my 13 year old son. After deciding on a name, I confided to a male friend my son liked. Made my friend suggest the name as though it was his idea. My son thought the name was perfect. Done.

calypsodweller

We Always Want What We Can't Have

One of my best friends through childhood used to be punished with no salad if she misbehaved. She cherishes salad now and would always try to eat as much as possible during school lunch. Coincidentally, her now husband used to be punished with no books, it had the same effect. I think it's hilarious that they'd be hitting the salad bar and library like some black market their narc parents couldn't reach hahaha.

cookiearthquake

A Deceit That's A Cut Above The Rest

Giphy

Don't know if this counts, but, at my high school (private, boys only) in the 1960's, they made a big deal about how long your hair was, and would occasionally order a boy to go home and "get a haircut".

I thought it was stupid, until years later, a master confided to me at a reunion that the policy was deliberate. The school figured we'd spend so much energy rebelling about hair length, that we would ignore other aspects of teenage rebellion. (Not?) Surprisingly, they were mostly right.

FrankDrakman

Damn! That's smart. Wow.

fangxx456

Oh they don't like long hair?

I'll show them. I'll grow my hair out as lon- what?! No I don't want to go "party"? I gotta try out this horse shampoo.

DankeyKang11

The Forbidden Book

Hi I was a victim,

There was a forbidden book that I was not allow to read on the shelf. My parents said I could only read it if I behave myself.

It was summer holidays and I was playing games all day (after 6 hrs of summer homework). One day I was home alone and had the opportunity to grabbed it. I read like half of it in one go. It was 5000 years of Chinese history.

Safe to say I was bamboozled.

oddstodd

Flowers Of The Queen

My parents always told me my broccoli were the flowers of the queen and that I really shouldn't eat them, or else the queen would get very upset! I, of course, ate the whole broccoli in a few seconds.

Subwoofy

I'm telling the queen and she's gonna be pissed

draculacletus

Sleeping Beauty

Giphy

I taught my kids when they were toddlers that no amount of yelling, shaking or hitting can wake a sleeping adult. The only thing that works is a gentle hug and/or a nice kiss on the cheek.

Edit: Probably needed some more details for the reverse psychology aspect to be clear. It went something like this - Step one, tell the kids I'm going to sleep and nothing they do will wake me (head buried face down is the safest position). Step two, after the initial onslaught dies down pretend to awaken on your own. Tell them you got a bit of nap left in you and nothing can wake you, especially not hugs and kisses.

DrMethusael

Holy sh*t...if my daughter woke me up like this I would buy her a pony.

All-Seeing_Elon

I am saving this comment because this will save lives if I ever have kids, stg.

smerter

A Walk In Someone Else's Shoes.

Split custody with my ex. When my son was around 10, he visited two weekends a month. I was waiting tables and didn't have a huge amount to spend, but he was so needy from divorce (and I'm not blaming him, it was ugly), he begged constantly for MORE when he was with me. Whatever more was, it didn't matter... he'd be eating ice cream cone and begging for teriyaki.

I finally realized that he just felt empty, and getting MORE whatever from me wasn't filling him up. His next visit I handed him $100 in cash and told him it was our food/fun budget for 3 days and two nights, and he was in charge of it. I bought him his own wallet to carry. We figured out how many times we were going to eat and what we were going to do, and he paid. He got to keep whatever money he had left...thought he was rich...then realized just how much everything cost. Well. Shoe on other foot then. If we had no money for food, we ate leftovers - and I didn't contribute more to pot. After a few weekends of running short or not getting something he actually wanted because he was foolish with funds, he started to really think about how to spend that money. He budgeted and kept to his budget. And a few times he actually went home with a little cash for his private stash.

Many years later, he thanked me for this. It really changed the way he thought about money and love.

Augumenti

This Is Worth Giving A Shot

Took my 3 year old son to one of those doctor's visits where he was going to get a shot. He was worried about the shot on the whole drive over, almost to the point of tears. We get to the doctor's office and a nurse subtly lets me know that my son is not just scheduled for 1 shot, but 5 of them in the same visit.

I turn to my son with an exaggerated smile and tell him, "Good news! They figured out how to take that one big shot you were going to get and instead break it up into these 5 little tiny shots so it won't hurt nearly as much!"

You could see the relief wash over his face. He stopped squirming and relaxed completely. He took the first shot and even smiled and said "It's true! The small ones don't hurt!"

We actually made it through the third shot before the effect wore off and reality kicked in. Still... I counted it as a victory.

blackbird77

Put This To The Taste

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My mom would tell me she only lets me eat soup after candy and she'd only buy me candy that i didn't like. After a few times, i stopped trying and begged her to let me eat soup first. She gave me a smirk and told me go ahead. This doesn't sound as evil as it was. But trust me i suffered.

turkeypr0

So what was the candy?

Poster_Main

Mint chocolate, raisins, stuff like that. I still hate them to this day. Who the f--- thought while eating chocolate "hmm id like some tooth paste with this."

turkeypr0

This is Truckin' Awesome

Mum had sworn a bit around the house.

When 4, while out at the supermarket, I said F word really loudly.

Very quickly and intently, she asked if I had just said "Truck" and said that was a bad word and not to ever say Truck like that again.

I thought that was the bad word so used that when being naughty.

GodOfTheThunder

The "Silly Mom" Routine

The "Silly Mom" routine.

My kid, and a few other kids I've known, would balk at getting ready to go. I'd grab their clothes and say, "Well, if you won't put on your clothes, I guess I'll put on your clothes. Cute shirt, by the way! Does it go on my foot?"

NO!

"Does it go on my head?"

NO! IT GOES ON ME!

"Oh, that's right, thanks! So, it must go on your legs, right?"

NO!

"I just can't figure this out! Where does this adorable shirt go?"

[kid grabs shirt and puts it on] ON MY TUMMY! SILLY MOM!

"Oh, thank you so much! Now what about these pants? Shirts go on tummies, so...the pants go on the tummy, too, right?"

NO!

[continue until kids have dressed themselves]

I would also do things like hand the kid my keys and say, "Alright, you're driving, I'll sit in the booster seat in back," attempt to feed the kid by putting a spoon up to his ear or his belly button, and attempt to put away his toys in the refrigerator.

insertcaffeine

Some Foot For Thought.

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My mum would always yell at us "if you don't do X, you have to go to bed without socks!"

I never wore socks anyway, and I'm ashamed to admit that this worked.

Splittsky

That would work really well on my son, or make him cry for a really long time... He's 3 and over the last few weeks has decided that he is fully unable to sleep without socks on.

PJQueen

Toddlers man. Completely unpredictable.

SheaRVA

I'm Greens With Envy

My mum had a friend that would put vegetables on her own plate and not the kids.

When the kids asked she would be reluctant to share, "that's grown up food. But I suppose I can let you have a little."

Her kids grew up loving vegetables.

I sat at the dinner table for 3 hours staring at the yucky cauliflower I refused to eat.

laik72

This reminds me of an instance when my child convinced my wife and myself to change our plans for dinner. We were in a grocery store to pick up something quick and easy to eat that we wouldn't have to prepare. Our daughter, wanted none of that, she demanded that she wanted a salad from the salad bar. We started to argue back, but then realized: "Our child demands that we feed her vegetables for dinner instead of a microwaved meal, why are we saying 'No?'"

We had salad for dinner that night.

Galaxy_Ranger_Bob

The Power Of Choice

I don't so much know if you would call it reverse psychology, but I didn't realize it until my dad told me this.

When there were chores that needed doing, he noticed if he asked me to mow the lawn, I would complain and procrastinate. But if he asked would I rather mow the lawn or wash the windows, I'd pick one and just get it done.

Shattered my brain when he told me when I was in my twenties. I use it when I'm coaching or baby sitting all the time and it almost never fails.

AppealToReason16

The Boy Who Cried 'Ouch'

Giphy

I've done this one with tens of kids. Any time a kid gets "hurt" (falls down on grass, gets gently hit in the face with a ball, etc.) instead of stopping the activity to pick the kid up and see if they're ok you just scoot them off to the side and resume. Within 10 seconds of not getting all the attention and seeing the fun is resuming they pop right back up and are magically healed.

This of course is only for the "injuries" that aren't actually injuries.

pedanticProgramer

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