Our sweet 9-year-old daughter Cookie has always been known to be curious, relentless, fearless, smart as a whip... and for having a real zest for life. She has loved riding her bike, running, roller skating, she still does these activities now, but she now does them to relieve pain. Most of all she was always a bright light and loved being around friends and family.
From the time Cookie began talking, she would tell us of a pain she had behind her legs. It would often get worse while she was sleeping and get us up often nightly to take a soothing bath. We have tried over the years to figure out what it was or at least get her some relief, but to no avail. In September-January of 2016/17 she and I both started into schooling and the pain that she had skyrocketed preventing her from really focusing on her studies. She was able to describe the pain as fire, knives, and hammers falling from high in the sky hitting her legs at all times. We started really working toward finding answers and we kept being pointed to the fact that there was no physical cause for the pain, that it must be neurologically caused. We started exploring this path but still weren’t really getting satisfactory answers. God did lead us to a series of people that were incredibly helpful in figuring this condition out. It is called Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD). We were even introduced to a young man that has this same condition, who shared with us that he had gone through the traditional medical route and gained the best medical care that is known, and that while he is able to function through life, all of the medical intervention actually made his condition worse. He has simply been left with the coping mechanisms he has been taught by a very expensive program.
So, what is RSD/CRPS? To start, it is the most painful medical condition known to man at a 45/50 on the McGill Pain Scale. Because it is so painful, coupled with the fact that it is hard to find good doctors to treat this condition, CRPS has a grim nickname: the “suicide disease.” We lose too many RSD/CRPS warriors because the pain is just so unbearable. Here is a quote that I found on the internet by a young lady with CRPS, “I personally have lost several friends to the disease, and I’m always fearing who will go next.”
CRPS is not well understood by most doctors and even more so family, friends, and teachers often find it difficult to understand because they cannot see the person's pain (visibly or through xrays, MRIs etc). Flares can fluctuate from day to day, so one day Cookie can be running and playing without much indication of pain, while the next day she will feel so poorly she will need to stay in bed.
CRPS is debilitating and its negative effects are cumulative. The patient usually eventually loses circulation and function of the affected area, leading to atrophy. Exercise, which is an important course of treatment - is incredibly painful. The standard progression of this disease is that the autonomic nervous system gets stuck in a loop that amplifies pain and it can migrate to other areas of the body as well. It causes Allodynia (pain from normal stimuli such as temperature change, small vibration such as going over a small bump while riding in a car, even the sensation of wind on the skin). The affected area has strange skin coloring, sometimes swollen, and has rapid hair and nail growth. It is also associated with many seemingly unrelated symptoms such as the inability to keep food down, sensitivity to noise. This syndrome seems to have no sympathy for the sufferer and while the medical community touts that there is hope for recently diagnosed patients, it is known among those people that have had it for a while that oftentimes suicide feels like the only way out of the pain. The point being that without treatment, this disease simply consumes the human being to the point that the only recourse for relief seems to be death! Cookie has said as much to me nearly daily in the last year (not even knowing that it has been labelled with such an ominous title) which is simply terrifying and heartwrenching for a parent to hear!
As heavy as that is, we choose to engage from a positive perspective and we are told that we are very fortunate with Cookie! We have been able to halt the progression of the disease by some therapies and major stress reduction. Nonetheless her daily life has been greatly affected by this condition, and her life as well as her bright light - has diminished considerably.
The good news is that we recently found a Doctor with documented success in treating CRPS! Dr. Katinka van der Merwe operates The Neurologic Pain Relief Center in Fayetteville, Arkansas. This doctor’s intent is not to block pain signals with pills or place a permanent device to “scramble” her nerves as a symptomatic treatment, but to discover and release the origin of her pain. She practices on the cutting edge of pain science.
The costs are out-of-pocket and overwhelming, as insurance does not cover the clinic’s fee (as we had hoped it would), not to mention the travel, lodging, and other expenses associated with a 10-week intensive program. We are presently seeking out this form of treatment because no other doctor or treatment protocol has eased Cookie’s pain or carries the hope of reversal as this treatment does. We arrived at the clinic believing we had brought enough money to cover the cost (and again were anticipating coverage by insurance), but after 4 weeks have discovered that Cookie needs more neuromuscular retraining than we had hoped, and that she would greatly benefit from a couple of newer treatments that are optional, but through these treatments we see evidence of and they have proven to be incredibly powerful to those who suffer from CRPS.
After meeting Dr. Van Der Merwe, Cordis and I, but especially Cookie, have found what we believe to be real hope for the first time. We have taken a leap of faith but have found we can’t do it alone. It is really difficult for us to extend this request, but Cookie has suffered - and our family has been pained along with her for far too long! We would rather not have to pack up and go home (being 5 weeks in) and interrupt her treatment in order to save for the continued treatments that she really needs. So, with sincere humility, we ask that you consider contributing to help us raise funds for Cookie’s continued care. Every little bit will help and will ensure Cookie will get her life and light back, as her doctors and therapists are very confident that Cookie will recover fully if she continues her course of treatment! To the same degree, we ask for your prayers for her as she finishes this treatment and continues this painful but necessary journey to be completely healed and free to live life to the full! Be assured, this girl is a fighter and will persevere, she just needs an army of support right now to finish and overcome to victory!
We humbly ask you to help us help Cookie get her life back! Thank you in advance for whatever you can do to help, you are a blessing!
In Love and absolute gratitude…
Cordis, Denise and Cookie Foster
- Luke Jones
- Kim and Kris Kentera
- John & Sandy Conger
- Holly York
- Amanda Jenkins
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