Elena Osborne- Help Our Little Star Shine Again

On March 28, 2022, our daughter, Elena was a vibrant, outgoing 11 year-old practicing for her role as Lumiere in her schools production of Beauty and the Beast. She was dancing and twisted her ankle. This common injury has turned into a devastating medical condition. 

Elena has been diagnosed with Complex Regional Pain Syndrome (CRPS), a rare but debilitating pain disorder, like an autoimmune disease of the central nervous system. CRPS is considered to be “The World’s Most Painful Disease” and also called the “The Suicide Disease.” CRPS can get worse overtime and may spread from the source to other areas in the body. 

Elena is currently suffering from extreme pain flares, attacks and episodes in her right foot/ankle. She is often unable to walk or bare weight on her foot and relies on a wheelchair.

Our family’s world has been turned upside down as we struggle to process this awful diagnosis. We are trying to learn to adapt to a child with a rare disease. We have hope though that early treatment will make a difference and put her into remission.

Our next step is a treatment called Scramber Therapy. Scrambler Therapy rewires the wrong pain signals from the brain to the nerves. The rewiring can give immediate, permanent relief and put CRPS in remission.

Will it cure Elena? No. Unfortunately CRPS is a permanent diagnosis. We are working towards relieving her pain for as long as possible to give her a life back.

The traditional medical route of drugs and PT have only taken Elena so far. Normal daily activities like school and theater are very difficult at this point in her pain journey. We want her to be able to go back to school and participate in her favorite activities again.

Elena has been working so hard! She does physical therapy and aquatic therapy daily. She sees a pain physical medicine specialist and a pain psychologist. She takes up to 9 different medications daily.

As you can imagine, the cost of her care is very high. Even with insurance we have a high deductible and high copays. We are facing many uncovered out of pocket expenses for rehabilitation therapies, medication and medical devices.

Scrambler treatments are not covered by insurance. We start with 10 days of treatment and go from there. The facility is 3 1/2 hours from home so we will need to stay in the area.

Elena was recently accepted as a patient by the well known CRPS specialist in Florida. People travel from all over the world to get his treatments. The Scrambler therapy cost starts at $6000. We have already incurred over $3,000 in out of pocket costs.

Originally she was scheduled for treatment in August, but the clinic just called to move her up to THIS MONDAY! We have to pay daily for her treatments.

This is where I humbly ask you for your help.

If you are able to donate or share our campaign, please do! Help is very difficult for me to ask for. We never imagined a medical crisis like this with Elena. It’s tough stuff. We appreciate your help.

#calmartherapy

#complexregionalpainsyndrome

#crps

#crpswarrior

#crpsawareness

#crpsstrong

#CRPSFighter

#ferociousfighter