Partnership Spotlight: Rebecca Hendricks & The End-FLUenza Project
Rebecca Hendricks is the founder of The End-FLUenza Project and a community partner of WithinReach through our Immunization Action Coalition of Washington. Rebecca was recently featured in the Los Angeles Times, and she took some time to sit down with us to answer our questions and share her story for this Partnership Spotlight.
Pictured left is Rebecca Hendricks with picture of Scarlet receiving a Flu vaccine at an End FLU-enza event.
Your website mentions that you were motivated by the loss of your daughter Scarlet to create this foundation, can you tell us a little more about your daughter and how she inspired you to start the Fight the Flu Foundation (now The End-FLUenza Project)?
On December 19, 2014, my 5-year-old daughter Scarlet Anne died. She died from the flu. However, it wasn’t until later that I found out her cause of death was the FLU!
When Scarlet was in the hospital, I was told she had Pneumonia. It wasn’t until 2 weeks after her death did I find out her actual cause of death was flu and there was no sign of Pneumonia in her lungs according to the Medical Examiner. Although, no answer will ever be OK- I felt like pneumonia was easier to accept than flu. I had never heard of anyone dying from flu; I thought my child was the only child on the face of this earth that ever died from flu. I couldn’t wrap my head around how a person could die from just a bad cold… I just couldn’t.
The whole situation happened so suddenly, less than 48 hours. I replayed each day leading up to her death and most of it just didn’t make sense. Literally, the day before she died she was racing me to the door of her dentist office, for her check-up. Then the next moment, I’m sitting there, wondering what I’m going to do with my life? What am I going to do without my first girl? My middle child. My tiny dancer.
Scarlet was fearless. The moment she made an entrance in to this world, she made a statement. Even at just 5, she was passionate and didn’t give up anything without a fight. I feared what each day held for me going forward without her. But it was reflecting on my Scarlet, and how her dreams excited her and how she knew with every ounce of her being that she could be whatever she wanted to be, that gave me strength during my time of grieving. Nothing was just a dream to her. I learned from losing her that being courageous wasn’t the absence of fear, but the triumph over it.
If all medicine was 100% effective, my daughter would be alive today. But while no medicine works 100% of the time, any percentage of effectiveness is better than none. I wish someone had told me what I was up against. Perhaps, my daughter would still be living fearlessly singing ‘Royal’ to the top of her lungs in my living room if she had gotten the flu vaccine.
What would you tell a fellow parent who also had never vaccinated or was on the fence about the flu vaccine?
I never vaccinated my family against flu. Quite frankly, I never even gave it second thought. I wasn’t against vaccination. I just didn’t think the flu was deadly like some of these other diseases my children got vaccines for. There were times I had my doubts about the vaccine due to hearsay. So, I decided to learn more about the flu, what it is, how to recognize it, how one gets it and especially, how to prevent it. After lots of reading, research, coffee dates, and phone calls with people like Suzanne, founder of Ladybug House and Cindy Smith from the Pierce Co Immunization Coalition and Christine from Every Child by two–I came to a few conclusions.
1.) My daughter was NOT the only child on the face of this earth who died from flu and in fact, it’s quite common for children and adults, sadly, to die from the flu and it’s still a threat every year.
2.) Vaccination is the best way to protect your children, yourself and your loved ones.
3.) People needed to know the flu can kill you but you can protect yourself.
I was so compelled and eager to tell everyone to get more informed about the flu risks. I wanted to start knocking on doors right then. I needed to get this important message out- and the people that needed to hear it, weren’t looking for it. It was in that moment I decided to create the Fight the Flu Foundation, now named The End-FLUenza Project.
It didn’t take long for the organization to establish a nationwide campaign around flu awareness — The Flu Hat Campaign. This campaign became an avenue for several moms with similar experiences as myself to find our place/ our purpose in this world after such tragic loss. The Flu Hat campaign gives us an opportunity to share our lost loved ones story and let everyone know they were real humans and the Flu was their cause of death. Through sharing our stories we were educating parents on protecting their vulnerable new baby from flu.
Can you tell me a little more about what The End-FLUenza Project is and what it does?
The End-FLUenza Project is a national organization who’s mission is to empower families within communities through education and awareness- to make informed decisions on preventative measures they can take to protect against influenza.
The Flu Hat Campaign is our major year around campaign. Our concept involves creating opportunities for flu education, by distributing hand-made baby hats to new mothers. These “made with love” hats are packaged inside bags, along with flu awareness/ educational materials. The baby bag also includes a story of a child who has either been affected by the flu or lost their fight to the flu. With our stories, we give parents a chance to make an informed decision with the information we presented in their ‘made with love’ mother bag. You can follow the campaign on social media through the hashtag: #ProtectEveryoneAroundYou
Of course, the key component of this campaign has been procuring the large number of hats needed. We are fortunate and grateful to have enlisted many wonderful volunteers specifically for this particular task. Generous and caring people from all over the world have been contributing their time (and yarn) to crochet or knit hats for us. The organization has received hats from as far as India! We are so thrilled to have delivered over 11,000 hats to 45 different hospitals in 26 states!
We also launched our annual Walk to Fight the Flu. This family fun, vendor and educational event brings the community together for an exciting day of shopping, games, music, raffles, the 5k walk, most importantly— our flu clinic! We offer NO COST flu shots to the entire public! Thanks to local pharmacies and our very own Medical Reserve Corps. This event is working its way to each state, we add a new state each year. This year will be our 3rd year. We will have Washington, Massachusetts and New York!
How is The End-FLUenza Project connected to WithinReach
Not only am I the founder of The End-FLUenza Project, but I am also now an active leader within the Pierce County Immunization Coalition as the Community Education Chairman. While there are so many reasons people don’t get a flu shot- it is my tireless life journey to present factual information, share the precious lives of those affected by the flu. And most importantly, I want to empower each individual I come in contact with to make an informed decision on their lifestyle actions to protect themselves and everyone around them.
All pictures generously provided by Rebecca Hendricks.
A continued conversation with Jessika Houston, Arc of Whatcom County
At WithinReach, we get to engage with families who are on a wide spectrum of places in their journey with a diagnosis of a special health or developmental need. Sometimes a family is just learning of a diagnosis prenatally, and sometimes they have many years of experience. The Arc of Washington and its nine regional chapters are excellent resources for families who are looking to connect around developmental disabilities, wherever they are on their journey.
We spoke with Jessika Houston, Down syndrome Outreach and Young Adult Self-Advocacy Coordinator at the Arc of Whatcom County to learn more about how she works with individuals and families with developmental disabilities:
“Down syndrome Outreach is a program that exists for individuals with Down syndrome, their family members, friends and caregivers from birth through life. We provide resources, information, advocacy support, and connect families and individuals in our community to support one another on their journey. There are annual support events specific to Down syndrome Outreach (DsO), such as the Buddy Walk in October and the Spring Fling in May.
On World Down syndrome Day (which is March 21), our community helps to bring awareness to their schools and work places about Down syndrome. The goal is to focus on honoring and appreciating our differences, all of them, and therefore encouraging the celebration of our differences and bringing support to all ages. In Whatcom County, there is a vision of change and inclusion for future generations. This has really determined the focus of an aspect of the work I do with DsO, which is to support new families.
When I started at The Arc I heard from our community the need to strengthen the supports for new families with a diagnosis of Down syndrome. There are many misconceptions and stereotypes about people with disabilities, and as Down syndrome is a chromosomal condition, we are able to learn of the diagnosis in the prenatal and postnatal stages.
The opportunity to provide support and resources at the time of diagnosis is one that historically has been missed in the Down syndrome community worldwide. In addition, many families have experienced negative interactions when receiving the diagnosis, with a lack of support and resources.
If families receive the diagnosis and then are told to seek out their own resources, they are vulnerable to inaccurate and prejudicial information. This does not fully engage and support this new family. Despite the challenges, countless families and self-advocates have been propelled from their experiences and helped to create policy which has shifted the dynamic in which families receive support.
In June 2016 in Washington State, the Down syndrome Information Act was passed in legislature. The law came forth because self-advocates spoke out about the impact on their families, and their vision of necessary support to new families.
The 2016 Down syndrome Information Act states: Medical Professionals are to provide materials to families at time of birth or pre-natal stages in delivering a likelihood of a diagnosis. Medical professionals affected by this bill are: midwife, osteopathic physician and surgeon & osteopathic physician’s assistant, physician & physician assistant, nurse, genetic counselor, hospitals, birthing centers & anyone/place in above categories that provide a parent with a prenatal or postnatal diagnosis. The WA State Department of Health has been working in response to this Law, and I have had the chance to connect with them in detail to discuss how we can ensure it is accessible and followed through by medical professionals in Washington State.
This past March, we held a statewide webinar regarding this issue. I am so grateful for the opportunity to be a part of something that we can now utilize as a resource supporting new families across the state. It has been incredible to see different communities and organizations from all over Washington come together to connect about these important issues to empower families and improve systems of care and support.
Before this law was passed, connecting with medical professionals and providing resources to them about this condition, is something I worked to bring to our local community. I have had the chance to present to various meetings with obstetricians, nurses, and midwives, and will continue this work as practitioners become more familiar with this new law. The main message I hope to convey to medical professionals is that the support, resources, and language that is used to give the diagnosis greatly impacts how the family will view their child and how they will utilize the resources available to them.
Through this work I have learned that by opening up our perspectives and working to be a resource, we are able to create systems of support that will sustain through time. They will persevere, find strength and challenges in new and unexpected ways and help transform thinking that includes all abilities and backgrounds.”
You can find more information about this work at the Department of Health here: http://www.doh.wa.gov/YouandYourFamily/InfantsandChildren/HealthandSafety/GeneticServices/DownSyndrome
And read more about the programs at the Arc of Whatcom County here: http://arcwhatcom.org/
Tags: Advocacy care community resources Developmental support diagnosis Disability Down syndrome Down syndrome Information Act states Down syndrome Outreach education programs empower families improve systems intellectual & developmental disabilities Medical Professionals support The Arc Washington state Whatcom County Young Adult
Family and Professional Connections: Promoting Self Advocacy at the Arc of Whatcom County
Through our work with special health and developmental resources, WithinReach has had the great pleasure to partner with agencies such as the Arc of Washington. The Arc is part of a national network dedicated to advocacy, community building, and resource referral for individuals with developmental disabilities and their families. Washington has nine chapters in King, Snohomish, Whatcom, Cowlitz, Grays Harbor, Kitsap/Jefferson, Spokane, Benton/Franklin, and Clark counties.
Part of the advocacy work that the Arc does is to support the perspective and rights of self-advocates, who are individuals with disabilities. To hear more about this important work, we reached out to Jessika Houston, Down syndrome Outreach and Young Adult Self-Advocacy Coordinator at the Arc of Whatcom County. Jessika was gracious to share with us her personal connection to this work, and what it means to her to be in this role:
“My work at The Arc directly relates to my personal life, as I am the sister of a young adult with Down syndrome, Mike. Mike has truly been one of the largest sources of inspiration for me and the path I have taken. I could not be more grateful for him in my life, for all that he has taught me and my family. From him I have learned persistence, patience, compassion, acceptance, resilience, will and grace, and the beauty of living in the moment. When I think of the strengths of living in a neurodiverse family, it comes back to those qualities in him that he has the ability to teach everyone that crosses his path. With him, there have always been moments that we wish we could just capture and visit any time we wanted – the moments that make you love life and trust exactly where you are.
And, in thinking of the challenges – those same qualities can come through, in a different light. The moments when Mike is so frustrated, trying to find the way to articulate what he needs or wants, and seems so tired and overwhelmed with…persisting, having patience…when acceptance of the situation cannot happen and the will takes over…those times are when you wish the moment would just end. There are also challenges that come from those that may not know about Down syndrome and how to engage someone with a disability. Yet, it is the moments of challenge that seem to inspire me the most.
After he was born, I found myself asking questions like: Why are people so afraid of what is different? How can I help? How can I learn about other perspectives? How can I be a resource to my family, my brother, my community?
I first learned of The Arc when I worked as a Living Skills Specialist for a supported living agency in Bellingham. My brother, without knowing it, inspired me to work there so I could learn more about what life as an adult can look like, how to advocate with and for someone, learn about independent living, how to help navigate the supports in someone’s life and discover what resources exist in the community.
In the Young Adult Self Advocates program, we talk about our visions, our goals and aspirations, and acknowledge the challenges and barriers that might exist. Self-Advocates are involved in community awareness projects, as well as focus on their individual skill building. They are also passionate about advocating in legislation for their individual needs, which also reflects needs in our community such as employment, housing, recreation, caregiver wages, among others. They aim to “Be Proud. Be Strong. Be Heard.“
If you are interested in learning more about the Arc of Whatcom County and the Young Adult Self Advocate program, visit http://arcwhatcom.org
Tags: Advocacy community community resources Developmental support Disability Down syndrome education programs Independent living intellectual & developmental disabilities Resources Special Health Care Needs The Arc Whatcom County Young Adult