My niece, AJ, is ten years old. She is kind, witty, and beautiful inside and out. She is one of the brightest little girls I know. Sometimes I feel like I am talking to a miniature adult. lol. She has always been very active and loves to play football with the boys, keeps up with her older brother and cousins on a longboard (I think it's as long as she is tall lol), and taught herself to do back hip circles on the bars. She's very outgoing, determined, and fearless. However, over the last three months, her spirit has been crushed.

On February 2, 2017, AJ's life changed drastically. As a result of a severe sprain of her left ankle earlier in the school year, nerve damage was hiding beneath the surface and suddenly reared its ugly head in the form of aggressive, progressive CRPS (Complex Regional Pain Syndrome).

On that day, AJ was suddenly stricken with severe left side body pain from her left toes to her left shoulder. Her nervous system was assaulting her, causing her to hobble over in pain. Within a couple days, she was unable to bear any weight on her left leg and even the slightest touch causes instant pain. Within a couple weeks the circulation of her left leg became impacted, turning a dusky purple within minutes of being in an upright position. Her pain level is constant but she also has additional severe flare ups. According to the McGill Pain Scale, CRPS pain rates at the top, ABOVE unprepared childbirth AND amputation of a digit without anesthesia. The saddest part is NO pain meds have been effective.

Her mother Robyn (my sister) has taken AJ to numerous emergency rooms, primary care doctors, and specialists trying to find answers. It wasn't until AJ was hospitalized in the beginning of March 2017 that a diagnosis was made. CRPS. 4 letters with life altering implications. No more busy little bee bouncing off the walls. No more headstands while watching tv. No more life as she knew it. In fact, AJ has been unable to attend school since February due to the amount of pain she is in. This has been very hard on her since she is in the gifted program and loves to learn. Plus, she loves and misses her friends so much. 

There is no cure for CRPS (a central nervous system disorder) and there is no set treatment. Pain medications are mostly ineffective. To give you an idea - AJ is only about 4 ft 5 inches and 67 lbs...while hospitalized, the nurse pushed TWO doses of morphine during a flare up... it provided no relief...it didn't even make her loopy to de-escalate her. Another time, the emergency room tried a combo of valium, oxy and toradol...again NO relief. Such a little body should have found relief from such potent medications.

The only treatment options at this time are physical therapy, occupational therapy, pool therapy and pain counseling. Imagine telling a 10 year old child that she must simply learn to live with the pain..that she must find a way to MOVE through the pain... Imagine that same 10 year old child waking from her sleep in the middle of the night, screaming, sure that the bones inside her body are breaking... And the most difficult thing for my sister, as AJ's mother, is being unable to fix it, unable to physically console her because touch causes more pain, only able to stay awake with her, talking, singing silly songs to her, mentally praying until AJ finally passed out from exhaustion. Unfortunately, this is the curse of CRPS. 

Since February, Robyn's income was reduced due to missing work for AJ's appointments. For the past month, she has been on full-time unpaid FMLA with no anticipated return date. Robyn is a single mom and the sole provider for her two kids. Right now her priority has to be AJ's needs. Plus, my sister is working with local doctors and insurance to get AJ seen by an out-of-state specialist due to limited options in-state.

I have always looked up to Robyn, not just because she is my older sister, but because she truly has a heart of gold. She has always went out of her way to help others. She has always been a strong, driven individual who has stood up to anything life has thrown her way. But right now she is in need of help, so I am setting up this account for them.

Any and all amounts donated would help tremendously and would be greatly appreciated. Over the next few months, my sister will be focused on trying to obtain the best treatments and results for my little niece. All donations will be used to increase AJ's quality of life, to include her daily living expenses, travel expenses for out-of-state medical treatment, alternative therapies, wellness activities, educational opportunities, etc. 

If you are not able to donate, please take the time to share. Freefunder will donate $20 to our cause if we reach 100 shares and an additional $50 if we reach 500 shares. Additionally, sharing AJ's story brings awareness to a mysterious and debilitating disorder that desperately needs attention. So please share this link!

Above all, we greatly appreciate your prayers and support!