MS AWARENESS Joey Marra

Since March Is MS AWARENESS MONTH, I wanted to do something special. I cannot think of anything more special than to introduce you to others that are more aware of MS every single day. We all live it, so this is the real MS. There are some very diverse stories that will be happening throughout this month and hey it may go longer the way it is looking. Which is AWESOME!  These are the REAL stories of MS and the REAL people that have it.You will see all types of people and stages of MS. I hope you see how different people are that have MS.  I would like to add before I start this.(as I always do) To always check with your dr before you change anything in your own personal MS regimen. What works for one may not be the answer for another. ~ Nancy

Today, I want you to meet Joey Marra. (His story as told by his mom /caretaker  /superwoman Carole J. Stoll-Marra)

It all started in Feb, 2005 when Joey was 7 years old. His eyes were bothering him and it appeared he had pink eye (I thought)
So, I took him to the Pediatrician’s office.  They did diagnose him with “pink eye”. Gave him some eye drops, sent us on our way..a few days passed. Joey’s eyes seemed worse.
The left one was red.He was in excruciating pain.We took him back to the Dr.  They sent us to an eye specialist where he was diagnosed with Uveitis.(inflammation of the iris).
I NEVER heard of it. Had NO idea what it was.
They told us there was an underlying cause..boy,they were right!!

The very next day,Joey was losing his balance,had memory problems and was very tired..too tired for a 7 year old boy,I thought,
Then,he fell hard on the kitchen floor & could not get up..we called 911 and they took him by ambulance to Women & Children’s Hospital Of Buffalo.They admitted him. They did numerous tests..MRI’s,spinal tap,blood work,etc..also started treating him with steroids.
They found lesions on his brain. They suspected ADEM..he was released a week or two later only to have more debilitating symptoms..and ended up back in the hospital several times that summer..then, MS was suspected but we were told several times he was too young, not to worry.
We wanted answers..so,June,2005 we took Joey to Children’s Hospital Of Philadelphia where he was admitted..more tests,steroids,etc.

The team of neurologists came in and told us they highly suspected Multiple Sclerosis.

That we were going to need all kinds of support.But,they did not diagnose him, sent us home.
Buffalo was hesitant to diagnose him because of him being so young.Then,Joey had another flare-up..back in the hospital, back for more tests and steroids..sent home again. numerous Drs. appts. until..

The diagnosis day-Jan.10th,2006 Joey was 8 years old.
Came the appt,I “thought” the neurologist was going to tell us he was going to be okay.
We sat down and she came in the room saying “It looks like MS.”
What do you mean,I said? You told me all along he was too young.
She just looked at me and handed me a packet about MS & Avonex.
Told me a visiting nurse would be calling to set up a time to show us how to do his shots.

Avonex took away Joey’s quality of life,(I personally feel)..so,they put him on Betaseron which caused his liver enzymes to elevate.Copaxone came next which he tolerated well but turned blue and stopped breathing after injecting himself a few times..Jan.2012 was the final Copaxone shot that almost killed him.We called 911 again.. while we were standing in our living room with eight EMT’s. That was enough. I called his neurologist and  told him NO MORE shots!!

Here we are three years later.We DO NOT regret our decision and are fully aware it is possible some day Joey will have to go back on treatment. But,for now he is eating healthy, clean diet, exercising 2-3 hours a day,has lost a lot of the weight he gained from the treatments and is an honor student.

Joey won the “Making A Difference Award” in 2006 for a book he wrote called ” I am a kid with MS”.. We went to the National MS Conference in Orlando,Florida where he read his book in front of 1,000 people! We met Richard Pryor’s daughter & David Lander..it was sooo cool!!!

Joey’s mom,  Carole, Is Joeys advocate, his cheer leader, his caregiver, from having to help him get out of bed some days, to being his eyes, and making sure he finds his way around in a store without getting lost. “His eyes are so sensitive to light he has problems seeing where he is, He can get turned around so easy in a store.”

I asked her how they handle all that goes on with M.S. she said “he has an amazing attitude and wonderful sense of humor”  (she is always talking about him and her son Jacob I kept trying to talk about her she kept guiding me back to them hahaha)

Carole is such an amazing mother, you can see it in her posts online and how she just beams in her photos.

Joeys brother Jacob loves to cook, actually, he does most of their cooking she says and they refer to him as “Chef Jacob”. I have seen some of his amazing dishes online with a host of likes and “what time is dinner”

I have to tell you he is pretty amazing from what I have seen! They all support each other.  That is truly what it is about.

They tackle this as a family.  They do MS walks. Fund raising.

They have a wonderful support system for Joey and for all of them.

This poem that Joey wrote I think says it all perfectly,

Joey will be 18 on March 19, 2015.

KEEP UP THE GOOD FIGHT! YOU TRULY ARE AN INSPIRATION AND AN MS HERO!

Nancy Jones

Advertisement