Our story

The first year, the uncertainty

Our story begins on June 16, 2016, when our beautiful daughter Lexi was born.

Lexi was a wonderful and cheerful baby, sweet and sweet. Everything went as it should with a baby.

But from about six months old, we started to feel that Lexi was "different" from her older brother, that she wasn't developing as quickly. Very different, to say the least.

It also seemed like Lexi was slowly losing skills she'd already learned; not a good sign, we thought. We didn't understand this.
But at first we thought it was 'a phase'. We are now fast-forwarding through time;

• through our expressions of uncertainty towards (and the discussions with) the Consultation Bureau
• past the physiotherapist's treatments that did not help, to November 2017.

The diagnosis: your life turned upside down

November 10, 2017, to be precise. Then, scared and uncertain, we sat down across from the kindest pediatrician in the world, in a chilly consultation room at the Reinier de Graaf Hospital outpost, at a dull desk with only a computer.
Without any preamble, "it" was there immediately; the resolute commitment of a doctor about to deliver bad news. As a mother, my heart sank immediately, chills and cold sweats everywhere. You recognize these kinds of moments when they happen to you. These kinds of moments are

Grand. Forever. Permanent. This wasn't just a repeat appointment. This was something else. The tactic was clear: no beating around the bush.

We know what's wrong with Lexi. Why she is the way she is. She has RETT syndrome.

BAM. The unannounced, inexorable, devastating, and "life-changing" final result of the gene research: an MECP2 mutation.
A mutation. DNA. That's not good. A tricky DNA code that pinpoints the specific location of that nasty mutation.
The diagnosis, the diagnosis we so dreaded. There it was: RETT syndrome.
We'd never heard of it. We didn't know anything about its dormant and devastating existence. RETT occurs in very few girls and even fewer boys. Rett is rare. The Rett package, as we also call it, includes the following characteristics: loss of speech, loss of mobility, epilepsy, scoliosis, breathing problems, severe sleep problems, dyspraxia, stereotypical hand movements, heart problems, extreme teeth grinding... and many more unpleasant things.
Lexi can't do anything about it. Fighting is impossible. There's no way to escape the devastating Rett Pack.

The life that changed

November 10, 2017, remains the day the ground literally fell from beneath our feet. We fell into a black hole of deep grief. A pit of sorrow into which we sank.
How could this happen? Why us? Why Lexi? These are all questions we still grapple with, and to which we'll never get answers.

The end of our normal lives. We quickly realized we could close that book immediately. We tried to grasp, to imagine what our life with RETT would be like, what it would look like. Dreams, goals, wishes… we could push everything aside, delete it all, as we felt.

This marked the beginning of our life with RETT. Our life with a child with multiple disabilities. A ZEMB, even, a severely multiple disability.

So, RETT. The villain that's increasingly taking Lexi away from us. That's limiting Lexi more and more, that's taking our girl away piece by piece. From speech to mobility. Everything is gone or will be gone. And now it's practically a countdown to the pop-up of all the medical woes. Because that, too, is still waiting for us. It often feels like a ticking time bomb, that stupid RETT.

Our lives now revolve around acceptance, coping, and constantly adapting. Adapting in everything: adapted strollers, wheelchairs, cars, car seats, adapted houses with hoists, adapted walkers, adapted indoor standing tables, adapted outdoor standing tables, adapted daytime activities instead of primary school, speech computers, adapted wheelchair bikes, adapted clothing, adapted large diapers, splints, and adapted shoes. This is just a small selection of the adaptations we've had to deal with. In fact, everything has been adapted. And now we have, too. A modified family, that's what we are. Never "normal" again, regardless of all this.

The beginning of Zipper & so

A life full of adjustments and adaptations; it's just the way it is. "If it doesn't go the way it should, then it must go the way it goes" has become the motto here at home. We can't avoid it. But we'd like to do so with the mountain of necessary tools, resources, and materials that make everyday life as a parent/caregiver as easy as possible. Because ultimately, just like EVERYONE else, we just want to get on with our lives. Just participate in society. INCLUSION.
And that's where the seed for this venture was planted: easy, practical, but above all, beautiful and stylish shoes for Lexi. That was what we were struggling with. Or, more accurately, we were NOT struggling with. It turned out to be a huge search, with few hip, fashionable results. Regular shoes just aren't for Lexi. Unfortunately.
Shoes that can be easily worn with and without splints, shoes that toes can't curl in and that we don't have to force Lexi's feet into because she can't do it herself, surely those things must exist?
And it turns out such shoes did exist, just not in the Netherlands yet. Not in Europe either. But they did exist in the USA. They had already come up with something like that there.

Billy invented them, to be precise. Billy Price; a man, a father, an expert in the dilemma of putting on shoes, with feet that don't quite cooperate as you'd like. He invented a ready-made (regular) shoe with a zipper, which allows for zippers all around, making it easy to slip a foot into the open shoe.
We started by ordering Billy Footwear shoes as a test, four pairs to be exact. We wanted to see how it would go, and see if this would be the solution to our shoe problem. But it turned out to be a long ordering process, with no guarantee of shoes that would fit. We also had no experience with Billy Footwear or sizing. Fortunately, the Billy Footwear staff were kind and helpful with sizing advice, and we finally placed an order! Returns weren't necessary; Lexi fit the first pair perfectly with her braces! A good gamble, and all the risks were more than worth it! Three more pairs of shoes followed.

Practical and stylish

But what a breath of fresh air the Billy Footwear shoes were; what a difference!
Just plain, easy, cool, pretty, and trendy sneakers and boots for our Lexi. For over her braces, but also for when she's not wearing them, because we don't want her out the door in her socks. Other 4-year-olds don't do that either: go out in their socks. NO INCLUSION, that's what we think is important. RETT or not. Disability or not. Lexi walks (or sits) just like everyone else. That's our goal, our aim.
Thanks to Billy Footwear, that's possible. No more fiddling, pushing, or hassle. No more sore, crooked toes that you can't reach in the toe caps of shoes. No more pushing and shoving to get Lexi's foot to bend and get into a shoe. That's a thing of the past for us.
And, very importantly, Lexi looks radiant in her awesome kicks! This is, honestly, worth everything to us.

Born…

And so it happened; Zipper & Zo was conceived and born. Born out of love; love for Lexi and the search for a way around her Rett Syndrome and disabilities.

But also born of ambition. The ambition to offer Billy Footwear shoes to everyone, everyone who needs them. We believe that everyone, young and old, should be able to experience that something as normal, as small as being able to put on shoes easily and quickly, can make life a little less stressful and more enjoyable. Because those of us living with disabilities already have so many other things to worry about.

Billy Footwear offers a solution. Billy Footwear simply means cool shoes just like everyone else. Billy Footwear combines fashion and functionality in one shoe. Billy Footwear means INCLUSION! Inclusion because people with splints can still wear nice, regular shoes, but also inclusion because those who can't tie laces can still wear Billy Footwear. All it takes is a zipper. Flip-zip-go; at Zipper & Co.

And then there's the... & so on. This represents all the ideas we still have, and what we'll be offering in the webshop. More to come.


RettLex Foundation
But our ambition went even further. We also want to do some great things when our webshop launches.
And so we established the RettLex Foundation. For every pair of shoes sold, we donate €1 directly to the foundation. With the foundation's money, and after approval from the foundation's board, we'll use it to do wonderful things. Small initiatives, growing into larger ones. Helping people; supporting families.

We understand what living with a disability entails. We know how challenging everything can be sometimes. We want to help.
A wonderful group of "Friends of RettLex" is already developing around us. They help us to help people, to make families happy. They help us in areas where they're struggling. Areas that are often cringeworthy, where we often exclaim, "If only I had a piggy bank to help these people!" That's what we're going to dedicate ourselves to now. Doing good.
.To be continued.

On to great things; to a bright future with many happy kids and later adults who experience the comfort of BillyFootwear in the Netherlands and Belgium while walking, sitting, or rolling.


Lots of love, team zipper & zo