Annabella's CRPS Treatments

$7,125 of $20,000 goal

Raised by 81 people in 8 months
In October 2017 Annabella our 11 yr old daughter missed a step, fell down the staircase in our home and sprained her ankle and foot.  At the time we thought, "poor baby!" and gave her lots of love, fully expecting a normal recovery over the next few weeks. However a re-injury just 2 weeks later caused her to contract a rare condition known as Complex regional pain syndrome.  CRPS is ranked as one of the most painful conditions known to modern medicine. Our world turned upside down, as our healthy vibrant daughter began a journey of pain.

Complex regional pain syndrome (CRPS) is a chronic pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. It’s a cruel condition that is both rare and unbelievably expensive to treat.

Basically her brain is stuck in a constant state of "fight or flight" in which her pain receptors cannot turn off. She's in persistent chronic pain at an unbelievably high level. Think of it like this; if I were to blow gently on her foot, to her it feels like frostbite. The warmth of my hand would feel like a blazing fire. A stroke using a baby bird’s feather is like razor blades. Needless to say it a terrible way to spend even a few weeks and Annabella has been living with this for six months! Recovery is woefully slow, but there is great hope in the treatments we are seeking. However, they come at seemingly insurmountable costs.

This disease is not easy to treat, and over the past 6 months we are learning more and more about how this effects Annabella's brain and body,  not just her foot.

Annabella has a very strong spirit and is determined to make the most of this regardless of the difficulties she faces. She has missed very little school, and outside of medical appointments, she refuses to be absent from a school, the teachers, the friends and the lessons that she loves. However, because of this disease, Annabella had to forego a class camping and surfing trip that she called her 'dream trip.' Missing out on this trip was so extremely disappointing for her.

Annabella optimistically yearns for a pain free future in which she walks without the use of crutches. She has plans to once again rock-climb, ride a horse, sail in the sea, participate in all her class trips, and maybe even attend a special “sleep away” summer camp in a majestic forest surrounded by nature which she deeply reveres.

Insurance is a cruel joke that offers little to no coverage - The only hope Annabella has for recovery comes at a price designed to decimate my family financially. It has been a constant battle to get treatments covered and the treatments that are the most promising and that hold the highest potential for recovery can only be attained “out of pocket.”

Annabella has been seen by a podiatrist, 2 pediatric neurologists, 1 orthopedic doctor,  2 chiropractors, a massage therapist, a functional doctor, 2 physical therapists, a cognitive behavioral therapist, a hypnotherapist,  and a doctor who uses scrambler therapy. I have also spoken to several pain specialists, and too many to count physical therapists.

To date, we have spent about $10,000, trying both traditional therapies as well as some cutting edge therapies, like scrambler therapy. Through the use of scrambler therapy (a type of electrotherapy that uses no-pain signals to disrupt the constant pain signals), we were able to arrest the allodynia that had spread up her leg. However, it has not yet provided her relief in her foot. Annabella is currently working with a fabulous cognitive behavioral therapist to deal with the chronic pain and also help her face the fact that she will have to endure even more pain to become functional again. Annabella is also working with a very talented physical therapist, who comes highly recommend. He practices osteopathic manual physical therapy and is not only working on getting her functional, but also working on all the systems of her body (her brain, spinal column, nervous system and lymphatic system) which have been affected by this disease.

Currently, just with the basics - physical therapy, cognitive behavioral therapy, and Annabella's medicines and supplements, we are spending between $500-$700/week out of pocket.

So here we are and we simply do not have a large enough pocket (does anyone really?). So we turn to you: friends, family and good people of the world. So many of you have asked how you can help, and all we really want is to continue providing Annabella with the best possible chance at remission. Perhaps our story can reach a few hundred(s) of you each with $20.00 to spare and together we can realize Annabella’s dream to simply live her life with as little or no pain as possible!
+ Read More
Hello everyone, Robyn here with some thoughts about today...

10 years ago this was my due date to have Juliette. Instead she arrived on October 7 but who would’ve known years later, October 6th would be a day that changed our lives so dramatically?

I remember when Annabella was a baby, I would count how old she was in days, and then weeks and months. Now I find myself counting again. Today is 365 days she has been in pain. 365 days. 1year.

Don’t get me wrong, I am so very grateful for where she is now... back on 2 feet. But it doesn’t mean that my heart doesn’t break every day knowing that my daughter is living in pain, more pain than any person should have to endure, let alone a 12 year old child. She has a strong spirit that won’t let this terrible disease crush her, but she struggles every single day.

The funny thing about pain is that it is invisible. As she gets more and more functional, it is less and less apparent that she is constantly dealing with this beast. And, boy, that big beautiful smile can fool anybody into thinking that everything is just fine. But that’s the thing about pain - you can’t see it... just like you can’t see the broken heart of a mother whose child is suffering.

As her mother, I have needed to be strong for her and although many nights I spend crying after she has gone to sleep, every morning her beautiful face reminds me to find positivity, gratitude and hope every day.

So I am grateful. I am grateful for everyday that I get to be a mother to two extraordinary beings. I am grateful for my husband Mark who has been by my side through the worst time in our life. I am grateful for all the people who have come into our life and helped in some way or another along this path. I am grateful for the friends and family who have supported us. I am grateful for any child who took the time to slow down and walk with my daughter when she couldn’t keep up with the rest of the children. I am grateful for our team of healers and therapists who are guiding Annabella through this painful journey. I am grateful to Jeffrey who, with deep dedication works hard with Annabella to crush this disease that does not yet have a cure. I am grateful to be able to touch my daughter’s foot again. I am grateful for every step Annabella takes. I am grateful when I hear my daughter laugh, and for any opportunity for joy.

And we continue on with hope in our heart - searching for a cure, and working hard in therapy and in every moment. With all my being, I yearn for my daughter to be free of this beast, free from the pain, and be able to use her body in all the ways she wants to, everyday.
+ Read More
This past month Annabella has had the most progress in her physical therapy. We are so very grateful to have Annabella working with Jeffrey Bender, her physical therapist/coach/healer. Annabella has been learning how to cope with her daily pain in order to do the work necessary to reclaim function in her foot. She is now able to tolerate wearing a shoe for short periods of time, and has a daily exercise/strengthening routine. It is incredible to watch her determination as she works out daily for 1.5-2 hours. Her podiatrist, Dr. Leder, prescribed a special brace that allows Annabella to intensify her exercises and safe-guard against any potential re-injury.

It is truly amazing to see how Annabella's spirit remains unbroken. She is completely willing to do anything it takes to regain function and get back to walking, running, and playing as quickly as possible. She has been more than amazing throughout this process. She has a long road ahead of her, as she has atrophied and lost bone density from not walking for so long. We are hopeful that in the next month or so, she can progress from a walker to a cane. And in time, we hope that the chronic pain that she experiences will reset so that our daughter can live her days pain-free. We'd like to thank everyone and the compassion, support and love our family has received. We cannot thank everyone enough.

Love, Robyn & Mark
+ Read More
Annabella update. 8 months.
Although Annabella lives with much pain everyday, she has been working extremely hard and is learning how to accept her pain and push through it so she can get back the function of her foot. We are so extremely grateful to have an awesome team... Her podiatrist, Dr. Leder, who has been a constant source of support and guidance from the very beginning. Her therapist Dr. Patino Fernandez who works with her on understanding how to cope with chronic pain and learn to have a different relationship to the pain. And her physical therapist, Jeffrey Bender who, with much knowledge, compassion and encouragement is guiding her on this journey and helping her reclaim her foot. She has made great progress in the past couple weeks. Where she hadn’t been able to even touch or wash her foot, she can now do that. She is beginning to bear some weight and even is using a walker at home. We know we have a long road ahead of us, but are excited to be seeing progress. We are grateful for all the support of our friends and family! Much Love, Robyn and Mark
+ Read More
Thank you for all the amazing love and support (both online and off). We are truly in awe of the limitless love generosity you have for Annabella. She is a fierce fighter who remains with a spirit unbowed that rises to every challenge. She teaches us daily how determination can vanquish fear and how laughter and love serve as inexhaustible weapons!
Our Ferocious Fighter - Annabella!
+ Read More
Read a Previous Update

$7,125 of $20,000 goal

Raised by 81 people in 8 months
Your share could be bringing in donations. Sign in to track your impact.
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
Eimear Zone
1 month ago
Johanna Young
2 months ago
Anne Babitz
2 months ago
Teresa Baloyra Albert
2 months ago
Lisette Naranjo-Perez
3 months ago
5 months ago
Marsha Nippert
5 months ago
Melissa Marchiony
5 months ago
Frank Fernandez
6 months ago
Carol Larson
6 months ago
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.