It has been a while since our last update, as Bronwen's friends and family have been in the process of setting up a medical needs trust. Now that we have the trust set up, it is time to get some much needed fundraising going again.
Last year, hundreds of people came together, some of whom had never even met Bronwen, and donated more than $50,000, with gifts ranging from $5 to $5,000. It is time to pick up where we left off, and take it even further.
In the eight months since our last update, much has changed. Bronwen is paralyzed from the neck down. In March, she underwent a tracheostomy, in order to ease her breathing. As a result of the procedure, Bronwen is no longer able to communicate using her voice, and now communicates using eye gaze technology, which she is adept at operating through her Tobii eye tracking software.
Mentally, Bronwen is still Bronwen. She retains her piercing wit and sense of irony. She still dominates at making the best jokes, as she always has. These days, you can find her catching up on news and politics, watching Netflix, and hanging with friends, her husband Stephen and her dog Ziggy.
At the time of my last update, Bronwen was already being cared for around the clock, primarily by her amazing husband, Stephen, and by Eliza, the incredible mermaid DJ caregiver who seemed to fall from the sky at a time of acute need. Since receiving a tracheostomy, Bronwen requires 24-hour care at home. Over the last eight months, Bronwen and Stephen have recruited more wonderful caregivers to the team (we like to think of them as unicorns). There is Margaret, with her amazing nocturnal watch abilities, and Briana, with her stellar braiding and general hairstyling skills (see photos). These are just two shout-outs of many, to give an idea of what a beautiful thing we have going with Bronwen's entire caregiving team-- such strong and gentle souls enabling Bronwen to have the best quality of life possible, day and night. This is also where a dire need for fundraising comes in. Caregiving is not free, and the expense is not covered by insurance. This is in addition to ongoing, myriad medical expenses related to second-year ALS, including a monthly wheelchair-accessible van payment and the regular restocking of medical supplies.
At the moment, the cost for caregiving and expenses is staggering, ranging from $12,000 to $15,000 per month. There are no extra 0s in those numbers. It is costing Stephen and the Zwickers five digits every single month. I know you can do the math, but just to lay everything out, that adds up to a minimum of $144,000 per year in order to continue to provide Bronwen with the quality of life that she has been living since being diagnosed with ALS in December 2017.
We need All Hands on Deck for Bronwen again, and many many more hands than before, if possible. We need to pull out all the stops. In the next year, we need to nearly triple the $50,000+ we raised in 2018. We are hoping to raise at least $125,000, with the intention of renewing this goal every year after, until a treatment or cure is made available.
No one is an island. No one is anything without community. I am grateful to the community that Bronwen already has, and I hope we can continue to grow it in the next year. It is a travesty that living with ALS is so prohibitively expensive. I know these figures are daunting, but please know that any amount you contribute, or any way that you can lend a helping hand to this incredible human and her family, is a way of providing hope that cannot be articulated in words or calculated in numbers.
Here are some ways you can help right now:
1) Make a recurring monthly or a one-time donation to GoFundMe (ongoing, monthly support from any individuals who are able would be a huge help!) 2) Write a check directly to the trust (one-time or ongoing; contact me for details)* 3) Host local fundraising events to help gather funds and support (we know lots of you can throw a good party; time to let those skills shine and raise money in the process!)
*Anyone can contact me directly at email@example.com if you prefer not to use the online platform and want to make a donation directly to the trust.
I am going to end with a quote from Bronwen's sister, Vicki. "I believe the universe has our back. We have a really beautiful thing going and need abundance from the community to sustain it."
Thank you to everyone who helped us to reach our initial fundraising goal of $50,000. In eight months, hundreds of people, some of whom have never even met Bronwen, stepped up and helped this one-of-a-kind person and her family meet urgent needs.
We will likely have to raise more funds. More on that to come. For now, please know that your generosity has helped to pay for the following so far:
- installing a new, wheelchair accessible bathroom - a wheelchair accessible van - a Sleep Number bed, so that Bronwen can sleep more comfortably - a Tobii eye gaze system - lots of caregiver hours
Your donations have provided invaluable tools for Bronwen to continue to live with ALS. The reach of your generosity is immeasurable, but I hope that the above list allows you to imagine some concrete ways that you have helped Bronwen since the initiation of this fundraiser.
Thank you! Kassie
Background Story (April 2018):
On December 19, 2017, Bronwen Zwicker learned that she had amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease).
ALS is a disease that affects the nerve cells, or neurons, that control voluntary muscle movement. Voluntary muscles create movements that include chewing, walking and talking. The disease disrupts the motor neurons that the brain uses to communicate with the rest of the body, causing them to degenerate and eventually die. This means that the brain is no longer able to send messages to the muscles. When the muscles lose function, they become stiff, twitch, weaken, and atrophy.
The disease is comprehensive, eventually affecting all voluntary muscles in the body, and inhibiting the affected person's ability to speak, eat, move, and breathe.
There is no cure for ALS. So far, there has been no effective treatment to halt or reverse the progression of the disease. Three to five years is the amount of time that the majority of people who are diagnosed with ALS have to live. There are exceptions, with some living ten or more years from when symptoms first appear.
So far, you have been reading a general overview of ALS. There are sentences here that skip light years ahead of Bronwen's current everyday experience. To place commas between words as heavy with meaning as "speak," "eat," "move," and "breathe," as a way of describing all of the vital actions that ALS effectively ends, feels like an insult, a bludgeoning of the nuances that are packed into the very unique experience of being Bronwen Zwicker.
What I am trying to describe is actually impossible to articulate. I am trying to describe the indescribable. Bear with me. I love her, and this hurts.
When she was still a child, Bronwen's voice was already so powerful that she was asked to sing lead in a church play. The congregants who saw her perform thought that she had been hired as a ringer to sing the part. If you go to the Zwickers' house today and sit on the back porch as the sun is going down, you can still hear that voice, feel it as it reverberates through your entire body and through the lucky air of Richmond, and understand why those congregants thought that they were listening to a trained professional so many years ago. But singing for Bronwen is more difficult now. ALS is already affecting the muscles that are required to make those otherworldly sounds. Something that has always been second nature to Bronwen--such powerful sounds from such a small person!-- has turned into a physical challenge, and it will continue to grow more challenging. Every day is packed with profound differences from the day before.
There are not enough words to fit on a website that could adequately describe Bronwen Zwicker herself, nor the many changes she has already experienced in the few months since receiving her diagnosis. What is of utmost importance is to understand that the range of what is needed to facilitate her new everyday--with the realization that this everyday is always changing as the ALS progresses--means that a substantial amount of funding will be needed for Bronwen to be a person living in the United States with ALS. Given the costs the Zwicker family has already incurred and the unpredictability of the disease itself, there is no entirely accurate way to pinpoint a dollar amount for funds needed. Safe to say the amount is high, and it will continue to grow higher. There may be a lot of uncertainty right now, but one thing that is without a doubt is that Bronwen and her family should not have to go broke as a result of ALS.
This is where you can help.
Bronwen and her husband, Stephen Martineau, have moved in with Bronwen's parents, Bob and Dianne Zwicker. They will need to make modifications to their home so that Bronwen can live as comfortably as possible. Contractors have estimated that the cost for an accessible bathroom alone will be upwards of $30,000. The modifications are not covered by health insurance.
With assistance from friends and family, Bronwen has begun traveling to Baltimore to participate in weekly clinical trials at Johns Hopkins. Right now she is paying out-of-pocket for travel and overnight lodging. These costs will continue to add up as she must participate every three weeks in a trial that lasts a total of twenty-four weeks.
These are just some of the changes that have happened in four months. Beyond hospital bills, home modifications, and the costs of traveling for clinical trials, there are myriad expenses that could pile up, but could potentially be covered if enough funds can be raised, including:
- technology to help with communication and other activities - a power wheelchair and accessibility ramps - adaptable clothing and footwear - nursing and personal care - complimentary treatments such as massage and acupuncture
So let's get these donations going!
Spread the word. Share and re-share. Any gift amount will help.
*Note: All donations go to the Bronwen Zwicker Irrev Special Needs Trust.