As you know Kai fell from her bicycle on July 3rd causing trauma and damage to her sympathetic nerve. From this injury she has developed Reflex Sympathetic Dystrophy which has caused her debilitating pain and the most extreme sensitivity to touch. Even being touched lightly evokes expressions of severe pain. From the moment she awakens to going to sleep at night she suffers. Reflex sympathetic dystrophy (RSD), also called complex regional pain syndrome (CRPS), is a chronic, painful, and progressive neurological condition that affects the skin, muscles, joints, and bones. The syndrome usually develops in an injured limb and can stay isolated to that part of the body, but in Kai's extreme case it has traveled throughout her entire nervous system.

The exact cause of RSD is unknown. One theory is that a "short circuit" in the nervous system is responsible. This "short circuit" causes overactivity of the sympathetic (unconscious) nervous system which affects blood flow in the affected area causing skin discoloration, swelling, cold or warm fluctuation in temperature, and in Kai's case, the spreading of the condition throughout her entire body. She is in constant pain from her scalp to the soles of her feet.

I am writing today to first thank each and everyone of you for your constant prayers, thoughts and light towards our current situation as it pertains to our family and Kai. It has been a tremendous journey thus far and I really wouldn't have been able to get to this point without your continued Faith and Blessings. It has been a humbling experience, to say the least. Each and every day I am faced with the plight of trying to get my daughter the care and attention she needs to overcome this horrible condition she has acquired. Each day I face the constant struggle of explaining, documenting and researching to get the medical experts, with no prior experience in treating this condition, to realize the magnitude of the struggle and unhappiness my daughter faces daily because her life has been drastically altered. I relentlessly try to help them gain knowledge of this disorder which changes everything about living. To further educate them on its isolating condition and the affects it has had on her sensory recognition. Because her sympathetic nerve has been impacted, she now feels pain by a simple touch and this pain permeates throughout her entire body. Imagine awakening to the thought of spending your entire day with full body pain and not having the help and attention to get through it.

We now have her medical reports compiled that consist of an eighty page document outlining her condition and its effects, both physically and psychologically. We also have documentation dating from the day of her accident showing the progression of the disorder throughout the past months and neurological affect it has had on her nervous system. Because her condition is of the rarest form, the cases that have been documented and treated are not many. Because there are so few facilities in the U.S. that actually handle this disorder in children, attaining medical coverage has been an awesome task. I have gone into my second appeals process with the health-care provider and am now dealing with the directors on a much higher level. I have been fighting relentlessly to get the insurance company to approve the coverage for her care, but have not yet been able to have her admittance approved for the Boston recovery efforts. You can well imagine what my days have been like. You can also imagine what Her days have been like. She stated she feels as if she's in a group on"1" at school. It hurts me deeply to hear this coming from my daughter who is such an athletic, charismatic, loving, caring and nurturing human being.

I have now taken the insurance company head on. I have read about and witnessed the lackadaisical approach they have displayed in ineffectively helping and authorizing coverage for those that are most in need. Thankfully my daughter does not have a condition that impacts her breathing, but because of their inexperience dealing with this very uncommon and unknown disorder, (Reflex Sympathetic Dystrophy) my child has had to suffer. While waiting for the appeals process to go to a higher power I had to take this situation in an extremely different direction and work with multiple facilities in Missouri to help build a program from scratch to specifically work with her in the areas of physical, occupational and psychological therapy. I am educating them on this disorder and helping them understand how best to help my daughter recover. The Mayo Clinic in Boston has been a great contributor to my understanding and an advocate for me during this journey. They are helping to educate and treat Kai through the facility here as a band-aid approach. It's not what we prayed for but through the Blessing of God, over the next two weeks, she will be in extensive therapy from 9a.m. to 5p.m. She has also began thinking of her disorder in a much different way as she wants desperately to heal and to feel like a normal eleven year old sixth grader. Her gym teacher made her read the story of Wilma Rudolph and her journey through healing from Polio. It triggered something in her that wasn't there before and has allowed her to to deal with her pain in a much deeper and clearer way. This is all a testimony indeed. Having not the educational or medical experience myself, but all the while Knowing what needs to be addressed in order to rid her body of this pain and sensory dis-function. I have no idea what this approach will do, but right now I have No other choice. I must now handle this in a extremely different physical, medical and financial way. I am uncertain if my appeal will change and if the insurance company will listen to her doctors allowing her admittance into the Mayo clinic. I am uncertain if this band-aid approach will help or heal. I do know that I am eternally grateful to each and every one of you for your help, your deep prayer and your shining light throughout this complex and difficult journey. Thank you for sharing our story to those that have contributed to our cause. We are on our way to healing. We HAVE to know this will work.

Thank you so much again for your support, your thoughts and your Love for my daughter And my son. Continue to Pray as we will continue to hold you in our thoughts and prayers as well.

We Love You and Thank You so very, very much.

Karla, Nigel and Kai

7036 Dover Court
St. Louis, MO 63130
917.204.2000
karla.radford@yahoo.com