Zoe's Heroes: A CRPS Collaborative
You know that feeling when you don't know what to think - when you look around you and just see a blur of people - you feel hot all throughout your body and a voice inside your head tells you that you’re hurt and you need to do something about it. Well, that happened - and my friends took me to the nurse.
I could not put my foot down on the ground and no one could touch it. I was in a lot of pain. My dad got me crutches. Although I used the crutches, it still hurt. I went to school the next day. I never knew how it felt to be looked at in the worst way just because something was a little different about you. That first day was rough. After X-rays and MRIs and no diagnosis it got even tougher. I could not walk, the pain was awful, and every time people asked what happened, it hurt to tell the story.
Eventually it was spring break but I still couldn't move my foot. Then my birthday came but still I was not walking and still I was in pain. The Monday after my birthday was terrible. I woke up and could not get out of bed. I still could not walk. That day my dad got me a knee walker.
Another few weeks went by. It was almost the end of April and if you closed the door too fast to my room - which creates wind - I would cry from the pain in my foot. I was going to physical therapy where I was making no progress. Finally, the physical therapist suggested we might look into something called Complex Reagional Pain Syndrome. And he recommended that we find a pain specialist.
That doctor asked me a lot of questions, then he left the room with my dad. You remember that feeling that you get when you know that something is seriously wrong. Yeah, I had that feeling again. You can tell from the way the doctors talk and the way they look at you. After waiting for what felt like 3 years my dad and the doctor came back in all sad and sympathetic. That's when you know something is really, really wrong. It was then that the doctor diagnosed me with CRPS.
They scared me. A lot. I felt like I was never going to be normal again, never going run again or play soccer and other sports. I didn't want to lose that. We went to a few other doctors in New York City, just to be sure. They were sure. I had CRPS.
Please click on the video link to hear my full story. Through my journey I have learned a lot. Especially that kids in pain need to be diagnosed fast, they need to stay functional and engaged in their everyday life and that there are not enough nurses and pediatricians that are knowledgable about CRPS. With your help, it is my goal to raise money and awareness for Pediatric CRPS.
No amount is too small. I was told that your donations are tax deductible to the extent allowed by law.
Thank you for your support!
It was just over a year ago that we started Zoe’s heroes. Through all of Zoe’s awareness campaigns, Bobby’s hard work and persistence and all of your generous donations we have raised almost $50,000 (including donations made outside of GoFundMe) for pediatric CRPS.
To date, these funds have been used in part to create an accredited continuing education program for pediatricians, school nurses, and physical therapist. We chose these specific medical professionals because they are the places children typically go to first when they are in pain or have an acute injury. It is necessary and crucial to ensure that these disciplines have access to the very basic information that they need in order to understand this syndrome and to provide them with the tools to recognize it quickly. It is our hope that this educational course will help bring about more early diagnoses for children suffering from CRPS.
Throughout this past year, we have come in contact with many families whose children endure this challenging disease and we have learned about the vast amount of medical issues these kids face when not diagnosed quickly – within the first 3 months.
It is the goal of Zoe’s Heroes to continue to raise money and awareness for pediatric CRPS. In additional to this initial endeavor, we continue to evaluate and investigate direct donor to child donations for families whose children face this painful syndrome and need financial help for day-to-day expenses and for the more extensive treatment programs that this invisible disease requires.
Please watch the attached video to learn more from Zoe.
But before you go, we’d like to recognize and give a heartfelt thank you of gratitude and love to Zoe’s Papa Peter and Moma for contributing $5,000 to Zoe’s Heroes to kick off this second round of fundraising!!
The Gellert Family
I want to start off by saying how grateful I am for all of your donations and your support.
At the end of 2016, we raised over $23,000 for Zoe's Heroes in just 30 days. WOW, this is one of the biggest accomplishments of my life that I hope will keep growing in the new year to come.
There are a lot of people with CRPS out there and even though we are not able to help them all, a lot of people will benefit from the awareness we create and the help they receive because of your donations.
The goals of my Mitzvah project were to create awareness and raise money for a cause, and with your help we are doing that. I am now starting work on pamphlets to further spread awareness about CRPS. I plan to complete these pamphlets with the guidance of some of my doctors, and hope to get them into the offices of pediatricians and school nurses later this year.
All donations make a difference and I am grateful for your continued support in helping me to reach my goals. We will be hosting a fundraiser this year in November which I will keep you updated on as well.
You can continue to help by re-posting my video link to the GoFundMe site which is our way of raising funds and awareness for CRPS and childhood pain. The internet is really incredible and has also helped to connect us with other people who have experience with CRPS.
Please also follow @zoeshereos on Instagram and pass along the messages to friends and followers.
Thank you for all of your support and help through all of this.
Wishing you all a happy and healthy new year.
A thank you from Zoe's parents:
Our hearts are filled with gratitude and pride.
We are humbled by the unbelievable support from YOU - Zoe's closest friends and family, and the dear friends and business colleagues of her immediate family. Your messages of encouragement and warm wishes for recovery have been met with many smiles, tears and hugs.
As we help Zoe to reach her goals we are sifting through months of research and our personal notes in order to create the first edition pamphlet of her awareness campaign for pediatric CRPS. The sooner children are diagnosed, the more possible the recovery and the ease to the suffering. Speaking first hand, there is nothing worse than a child in pain. Which is why we are starting our efforts with the places kids go to first to report pain – their school nurse and their pediatrician. We have already reached out to their respective national associations for assistance. The funds donated by all of you will help to insure that this is executed properly.
Our family has committed to a lifelong service to Zoe's Heroes and our initial pledge is to donate $1,000 for every $10,000 raised up to $100,000. As we continue this campaign far beyond Zoe's Mitzvah project, we have begun to call upon and strategize with the founders and board members of a variety of organizations with missions related to CRPS and other pediatric related chronic pain disorders. There are many children in need with parents that require financial assistance to pay for doctor appointments and treatments that are not covered by insurance. We are working to put in place necessary processes and protocols to review and fund submitted requests.
Additionally, we believe that it is a worthwhile effort to fund research trials and projects with respect to Glia cell activation within the central nervous system. Glia cells amplify pain signals to the spinal cord and to the brain while also suppresses the effects of many pain medications. We intend to follow these studies closely and get involved as we gain more visibility and when appropriate.
While we can’t thank all of you enough, we ask that you continue to help us. The power of social media has proven incredible, reaching old friends from our lives and others suffering from CRPS that we have never met. With the help of your Facebook and Instagram posts and re-posts we have and will continue to build a community, connecting with others to share our learning about CRPS, and, gratefully, learn from them.
We wish each of you and your families good health, peace, and prosperity in the new year.
Lauren and Bobby