The first thing I remember is waking up and feeling like I was floating. I was above my bed suspended in the air. I wasn’t flying above myself or floating away; just a feeling of weightlessness. I was aware of my surroundings, but I did not know where I was. As quick as it came, it was gone.
This was in 1988 and I was only four years old. It was the beginning of August and the weather was hot. After having what my parents and pediatrician thought was a small stomach virus, my parents found me hard to wake and immediately got me in for another evaluation. When the physician first saw me, he told my parents to get me to the nearest emergency room.
By the time I arrived in the local ER, a mere one block away, I was unresponsive. My parents were then informed I was going to be flown to Riley Children’s Hospital. Riley was over three hours away by car so my parents gave quick kisses (hoping they weren’t the last) and began the drive to Indianapolis. My father, who was a local police officer, made it to the hospital before I did. Once at Riley, I spent close to a week recovering from what they could only describe as severe dehydration. I was discharged home with no adverse effects, but most importantly no reason or explanation. The feeling of weightlessness? I later discovered that I was in what’s called a Hoyer lift and was being weighed. I woke temporarily and was unconscious again within seconds.
Close to a month after coming home, it started again. Vomiting and dehydration along with drowsiness. My parents were panicked and my pediatrician was unavailable. Luckily, a colleague was able to see me and had heard of a newly discovered metabolic disorder that could be the answer. It was a rare disorder but it was worth a shot. My labs were sent off by mail to Yale University while I was once again admitted for dehydration. The results came back and confirmed her suspicions. I had a genetic, recessive fatty oxidation disorder called Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCAD). MCAD falls into the umbrella of Mitochondrial Disease which can effect energy levels, heart and brain function, and overall quality of life. Later on I would also be diagnosed with Ehlers-Danlos Syndrome and Mitochondrial Myopathy.
Over my childhood and early adulthood, I adapted to having an alternative diet, a little less energy that others, and frequent admissions to the hospital. Once I hit my mid twenties I felt like everything started to fall apart- literally. My body hurt all the time, my muscles had horrible spasms, my joints ached, and I constantly had a headache. I was able to somehow give birth to my two children after going on bedrest for preterm labor during both pregnancies. During my first pregnancy, I lost so much weight. When I was weighed on the day of delivery, I had finally gained enough weight to hit my pre-pregnancy weight.
On the outside we were a happy home. A newly married couple with two beautiful children and great jobs, but on the inside I was falling apart. Eventually I had a port placed so I could have daily infusions to maintain hydration and began using a power wheelchair at the hospital I worked at to conserve energy. After trying to “fake it till I make it” for nearly 2 years, I left the workforce to stay at home and put my health first.
2017 was the year I had to put me first. I know it sounds selfish but by putting me first, I was making sure that I would be there for my kids. I not only wanted to be there for them as children, but I wanted to make sure I would do my part to make sure I could potentially see events like high school graduation, weddings, and grandkids. Over the past several years I have been able to improve my quality of life. I have been able to wean off my wheelchair, in fact, I’ve completed three half marathons. The reality is that Mitochondrial Disease and Ehlers-Danlos Syndrome continue to cause chaos to my body. I’ve had multiple port revisions, a partial replaced knee, repaired cartilage in my hip, and countless days of fatigue.
The Alinker has the potential to be life changing. For me, it means I can resume neighborhood walks while my kids ride their bikes. It means when we go to the zoo, we can possibly see the entire zoo and not have to pick two exhibits. It means maybe, just maybe one day I’ll be able to return to Disney for another half marathon. It’s a way to conserve energy while allowing me to remain independent and self-sufficient. I know there is no cure but my goal is to remain as active as possible for as long as possible. I want my children to see and know what it means to fight for something you believe in. I believe the Alinker can be an amazing tool to improve the quality and maybe even my quantity of life! I truly appreciate any donation towards the innovative and rewarding Alinker. A heartfelt thank you for reading, donating, and/or sharing my journey!
The campaigns are about sharing. Most people have no idea what life is like when you live with MS or what happens after you have a stroke. Isolation is often a bigger problem than the symptoms of the disease itself. With the campaigns we can share and educate people, because it can happen to all of us. When we create a movement where people simply show up for each other, it might get a bit ‘safer’ and less ‘scary’ to engage with each other. Some people share their experiences on their campaign, others share their funds to support the campaigns. It is not about asking for money, it is creating an opportunity for people to learn and show up with #generosity. Being generous resonates with who we are as humans. We understand generosity deeply and when you practice it, you feel so much better
PLEASE NOTE
- The campaigns are in USD $, and since to the pandemic the price increased from September onwards $2950 USD. This includes the Alinker, shipping, process and campaign fees and our #AlinkerFamily support.
- The campaigns are all or nothing, no credit cards are charged unless the campaign reaches its goal.
- As soon as the campaign reaches its goal, we ship an Alinker (from direct stock or you'll be placed in line, delivery 6-8 weeks).
- Campaigners do not handle money. On disability or welfare, you cannot handle money without being penalized, but you can receive an Alinker !
- When the campaign raises more than the goal, the campaigner can chose another campaign which we then make the donation to, paying it forward, or the balance will be placed in our Collective Campaign to help future campaigners.
- If you want to start a campaign and are outside Canada or the USA, write an email to stephanie@thealinker.com. We can potentially get a shipping quote to where you live, and include that in the campaign goal, though we like to keep shipping at a minimum, so we will not ship anywhere beyond $250 shipping costs.
Together we build a movement of kindness and generosity, because we all need it
Why do we facilitate crowdfunding on our site?
We believe that the Alinkers should be available for everybody, regardless of income and people who start a crowdfunding campaign here, will have access to a life changing Alinker. These crowdfunding campaigns are the first step to make Alinkers available for everybody. BE and the Alinker company are now putting their energy together to build a generous community around all the campaigners! The campaigners are people who allow others to show up generously, give them love!
Here is the Alinker segment as was aired on CBS Innovation Nation October 2019 - https://youtu.be/pk96VDkJ9NU
Why an Alinker?
Generally, medical devices are a technical solution for a body with a
problem.
The Alinker is designed for who we are, a whole human
being, who wants to live an active and engaged life. We are a human,
we have a body. Whether we miss a leg of have MS, it does not change
who we are.
Yet the world we live in, treats us as a body with a problem, which creates a social divide between people based on their body, based on what we have, not on who we are. Isolation and loneliness are more devastating than the disease itself. So we need to show up for each other, acknowledge each other and be present to who we are.
These campaigns are here to bridge the gap between a high quality custom Alinker, and the people who live at the receiving end of a 'sickcare' system that drives people into poverty.
So, show up, be radically generous, it is something we humans really
understand.
When you read each story in each campaign, pause and
imagine who that person is, and why they started the campaign, reach
out to them, let them know they are surrounded and seen, heard and not
alone. When we do that, we feel better and create a safer community
where we know we can show up for each other. It connects us with our
essence, we are radically generous creatures, we just got a little
lost in systems that are not designed for our wellness.
Alinkers change lives, here are a few people
GO TO CROWDFUND, WHY, HOW, START
Who is the Alinker for?
The Alinker is for people who want to stay active, regardless of mobility challenges.
To operate and use the Alinker you must have the ability to:
- walk to some degree
- flex and extend your legs
- bear weight on one leg briefly while getting on and off the Alinker
- be consciously aware of your surroundings
- be aware of your ability and limitations
What is the Alinker?
The Alinker is an exceptionally cool, three-wheeled walking bike
for humans with mobility constraints. It’s not a medical device,
it’s a lifestyle tool, designed to enable users to lead active and
socially engaged lives — at eye level.
On the Alinker, users sit upright -- at eye level with standing
companions. Weight is supported by the seat with no stress on the
lower body, while handle bars provide additional support. Feet remain
on the ground, keeping users stable and safe.
GO TO CROWDFUND, WHY, HOW, START
