RoyalKnights1004's Blog

Hello,

Today we had a very nice lady from Fox 13 come to our house and meet our Mom. Tanya Arja came over and interviewed our mom and myself.  She allowed My mom to tell her story and see if there are any people out there willing to help her get her surgery.

I hope people see how sick our Mom is and maybe something will come out of it. You can see the video of Tanya's interview with our Mom on this website.

If anyone out there can do anything to help our Mom, contact Tanya and she will call me.

 

Thank you so much.

 

John-Michael

I'm sorry to bother you, but I'm very desperate.  I have emailed and called every person I can think of, but nobody cares about what a 14 year old has to say.  
 
My name is John-Michael and my sister's name is Sarah, we sent you another email but I don't think you got it because we never got an email from you.  Please, please help our mom. Our Mom is so nice and wonderful. Mom loves to spend time with us, play games, We love her so much. Mom has been very sick and bed ridden for long time. Mom has a rare brain malformation called Chiari Type 1 malformation. Its a very rare brain malformation, but you can find alot of good information online. My mom has had 4 brain surgeries , the first 2 were done wrong by a local doctor and 2 more to correct the first 2 surgeries. Mom' s symptoms came back and she has been from one doctor to another for over a year now, every doctor locally tells mom "its all in her head" there is nothing wrong with her and they dismiss her.  Mom finally mailed her mri to the Chiari institute in ny and they found what was causing moms pain. Mom is in pain 24/7 and has to spend all day in bed.  The doctors at the NY chiari institute say mom needs a surgery, this surgery is a new procedure they are doing for people like mom and this is such a new finding that the NY doctors haven't even published the findings of the study.  Mom needs this surgery is she'll ever is to have a normal life and be pain free. But the big problem is that mom now has an hmo and it doesn't cover doctors that are out of network. She spoke to the chiari institute billing man and he said that they no longer accept insurance, that way they can charge less for the procedure. Doesn't make sense to me... but mom needs her surgery. Please, please help our mom. we need our mom back. we need our active mom that takes us to the park, the pool, disney, etc. and we don't want to see mom in pain anymore.  Mom was crying because the billing may at the Chiari Institute told her the surgery is around $176K and mom says that is more than what our house is worth. She is desperate...  please help mom even is its only a little help. We will be forever grateful for your help.  I pray that you can do something to help our mom, she is a single mom, but she is our rock she is our everything. we don't know what we would do if mom has to go to heaven, we need our mom.  Please think about it and please see if you can help her. The Chiari institute has this new procedure and the doctors are working on publishing the results of doing this surgery. It would also help others with this illness if we do something to get the word out and doctors out there learn about the illness and how to treat it, instead of treating Chiari patients like Crazy people. (This illness is not known all that well, proof of that is my mom's first 2 brain surgeries were done wrong, It took 2 more surgeries to correct what was done first time around)
 
If you need to talk to our mom to get the details and the full story you can. I pray that The Lord will touch your heart and give you the need to help us.  Mom is so nice and so cool. She is the best mom in the world, even when she's sick she's a good mom and spends all her time with us. We just want her healthy and pain free.
 
I appreciate your time,  you don't know how hard it has been and how disappointing to send letters and emails to people I admire, just to realize they could care less.  Please see if you can help mom in any way.
Here is a link to one of many Chiari sites, just so you know I'm for real...   http://www.northshorelij.com/body.cfm?ID=6407   This is the place were Mom needs to go for surgery.
 

Thank you
John-Michael and Sarah
New Port Richey, FL