Jourdan vs AFM-Wake Up Gimpy!

Jourdan is an amazing little boy who has been battling a rare neuro immune disease for a little over a year now. He is full of life and has had the biggest smile on his face throughout his journey.  He was a perfectly healthy, extremely active, 5 year old little boy prior to being diagnosed with AFM or Acute Flaccid Myelitis. Jourdan started Kindergarten perfectly healthy, a week later he was completely paralyzed from the neck down on the right side of his body and very weak and flaccid on the left side. It all started with a simple virus, the same virus that causes the "common cold". He had a mild cough,  and a runny nose the week it started. He was seen and discharged home by 3 different doctors at different medical facilities. An hour after being sent home from the last visit, his right arm, his predominant arm, went limp and lifeless. He was rushed to an Emergency Room and slowly the paralysis spread throughout his body, mainly affecting his neck, lungs and right extremities. After many tests, procedures and days went by he was diagnosed with Acute Flaccid Myelitis. It is being compared to the "modern day Polio". That "common cold" virus attacked his spinal cord destroying and damaging the nerves that fed his muscles. The damage that was done was done. There are no known cures or treatment. AFM is extremely rare, 1/1 million, and there is very little known about it. By the grace of God, Jourdan was able to leave the hospital 2 months later. He fought hard with inpatient rehab and therapy and made many improvements. However, AFM left him paralyzed in his right arm, the right side of his neck and his right diaphragm. Upon discharge from the hospital, we were basically told "Good Luck" and that there was nothing more that could be done. As a mother, of a once very independent, normal little boy, I refused to accept that. From the day we left the hospital, the fight of my life started. Unfortunately, this fight has been emotionally, physically and of course financially draining. It has completely changed our lives and slowly drained our finances. Because AFM is so rare and there is so little data on it, most attempts at treatment, therapy and medical equipment are considered experimental. Therefore, most of our attempts at treatment have not been covered by insurance and has come out of pocket. After a year of fighting, and spending thousands and thousands of dollars, the struggle to keep up with treatment is getting harder and harder. I am asking for help to continue this battle. This is where my desperation and cry for help comes in. For those who have been following Jourdan's journey, you know that we have been doing a lot of medical traveling. After being told that there were no treatments or surgeries available to him in New Orleans, I looked else where and was able to find the best facilities in the country that were willing to help him. Unfortunately, it is thousands of miles from home. For the last year, we have been traveling to KKI, Spinal Cord Injury Institute in Baltimore and to Shriner's Hospital in Philadelphia every 3 months. Each trip consists of 2 weeks of intense outpatient therapy/rehab as well as appointments with specialists that are familiar with AFM. They have been following Jourdan's progress closely and we have been given a chance at recovery. Although we were told surgery was not an option, Jourdan had his multiple nerve transfer surgery almost 9 months ago. We are scheduled to see the surgeon for post op appontments during our upcoming trip. This will be our 6th trip in the last year, all of which has had to come out of pocket. These trips consists of 2 weeks in hotels, rental cars, plane tickets, etc...It is by no means cheap, but has been worth every penny we have spent on them. These trips have been our only shot at recovery. Because of these trips, we have seen so much improvement. We are seeing some of his nerves that were completely dead start to grow and come back to life. We are seeing his little muscles start to move in ways that were not possible. These are all things that we were told would probably not happen. And by no means can we give up now. Since his surgery, his bicep and tricep have started firing. We could not be more excited and thankful.  However, we are not seeing as much action from his shoulder and scapula that we were hoping for.  If he could possibly benefit from another surgery, I can't miss that window of time, like we almost missed the first one. Going through the rest of his life without being able to lift his arm or reach terrifies me. The thought of him struggling throughout life because we didn't have the means to travel for medical treatment is beyond overwhelming. He has come such a long way from where he was and we have KKI and Shriner's to thank for that. This kid deserves the best treatment available, no matter how far from home it is.
As most of you know, even with insurance, medical bills can become a financial burden. Imagine your insurance company denying most attempts at treatment and medical equipment, even if you know that they are working, but they consider it experimental. Especially if it's for your child. I refuse to give up now. One day other children may have the chance at a full recovery because of things we have and are going to continue to try. That is my biggest hope and ultimately my goal.

Eventhough, he is starting to show so many improvements, he still struggles with everyday activities that he was once able to do. Imagine your predominant arm/hand no longer working. He has learned to compensate as much as possible, but not being able to lift your arm or reach for things can definitely make things a challenge. His neck is still unstable because of the lack of muscles in that area so he cannot run or jump around like a 7 year old little boy should be able to.  He used to love playing baseball, climbing on the swing set and jumping on his trampoline. But these are just a few of the things he hasn't been able to do because of his spinal injuries. Time is going by so slow, but yet so fast beause he is missing some of the experiences every child should have. I am willing to do everything I can to make sure he enjoys his childhood to the fullest. Even if that means asking for help.

So, as his mother, I am asking you to consider donating, no matter how small to this recovery fund. This battle has been rough and it has finally caught up with us financially. It has been an ongoing, expensive illness that we could not have prepared for. It is not in my character to ask for anything from anyone. I have always been and still am a giver, no matter what my own struggles are. This battle has caused tons of debt, but has been worth every penny. I don't regret any of it. But I do regret not asking for help sooner. It is so hard to catch up on life once you get behind. I refuse to give up on finding a cure for my child, no matter what I have to lose along the way. I want him to be able to hug me again like he used to. I refuse to let medical bills and maxed out credit cards be the reason he misses out on all the things he should be able to experience and enjoy. This child is destined for greatness, I just need a little help getting him there every now and then.

I, by all means, understand that everyone is fighting thier own battle right now. But if you are able to contribute anything, no matter how small, to help me continue this battle, it would be so helpful and beyond appreciated. If you cannot, I ask that you share with someone who may be able to help. And as always, keep Jourdan and all the children fighting a battle in your prayers. Your prayers and support have gotten us where we are today and I couldnt be more grateful.


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Donations

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  • Angie Rexwinkle  
    • $20 
    • 30 mos
  • Alicia Strickland  
    • $50 
    • 30 mos
  • Treva Carroll 
    • $50 
    • 31 mos
  • Jason Feinberg 
    • $250 
    • 32 mos
  • Anonymous 
    • $10 
    • 34 mos
See all

Organizer

Chelsi Michel-Loyola 
Organizer
Marrero, LA
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