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 16 (now 17) year old Jacob was walking on the beach with his friends, only to have the rest of his life changed forever. 


While I was taking our toddler to the bathroom, he decided to go to the boardwalk to play frisbee. While playing, Jake set his foot down, and I was told, immediately dropped to his knees. He lifted his foot to see the issue and noticed a hole in his foot!

He assumed was only from a nail as many were uplifted and loose. He had to crawl to the car.I had never seen my athlete act like this over pain! The first hospital told us NOTHING was wrong!! We went home, but a few days later, it was apparent that there was something significantly not ok. His doc told us to go directly to the hospital and get hooked into IV antibiotics. 

He stayed like that for days. They did an MRI, and a Sonogram.. nothing. He was getting worse instead of better. Days later they did another MRI and saw a small abscess. Excited that we thought we knew the issue Jacob went down for the surgery to clean it out. Finally the doc comes out. There were a bunch of chunks of rotting wood that had been porcupined into his foot. Turns out the nail just helped push them in too far to be seen.


After, I thought he would heal. But it was apparent that he wasn't progressing the way the doctors would have liked. And Jake kept screaming "Something ISNT Right" He didn't want to leave the hospital and was terrified when we were released. The entire 2 weeks we were home he stopped talking other than to say that something was WRONG. He stopped eating. He was inconsolable. After 2 weeks I asked him to attend a family wedding, either on crutches or wheelchair. Jake's leg was turning purple, going ice cold and in pain. We thought it was a clot, went to the hospital, but no.

Eventually we found out that Jake has a terrible syndrome called RSD or CRPS. It's where the body goes into an automated trauma response and puts itself in constant pain. We learned the possibility that he might not use the leg again, and we knew everything tired him out. But that wasn't the worst of it.  There are terrifying possible outcomes. I've learned that its lifelong no matter what. That it could stay the same. Possibility of remission. But I've also learned that this could spread. It can creep its way into all your limbs, it can make you a complete paraplegic, in extreme cases it can go in your lungs and put you on a ventilator. It can and often does effect your sight, and rarely it can make you blind. That if anything causes your body trauma this disease could attack you. You can never have another surgery, you can't have chemo or radiation or this disease will take your whole body. God forbid you stub your toe the wrong way. Most people with this go in and out of wheelchairs, and have morphine pumps, talk suicide, etc.. 

There is absolutely no way of knowing how/when/if the condition will progress. Everyone is different. It’s not well known, and no specialists in the area at all. Its hard handle this blow to Jake's life. We are trying to send him to a rehab center in Nebraska that can help him. They teach you how to push through the pain while not damaging yourself further.

I was told that the younger you are the better the chances are to learn to help control this and use the limb without meds. It is a lifelong condition, ...your muscles atrophy quicker, your bones get osteoporosis easier, you get sick easier, your immune system is always on alert. BUT if caught in the beginning stages you can help yourself avoid that as long as possible. 

*edit  -- -  We found a treatment center willing to take Jake if we paid all upfront and are there in Nebraska now!  Please join us for a Benefit on June 24th at Randall Baptist Church in Williamsville at 2pm .. 


If you are not local or can't make it please consider donating at our Go Fund Me link on the home page.