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

I made this project with my Scrapbook Obsessions Kit Featuring 3 Bugs In a Rug Spread Your Wings Collection. How appropriate for what I wanted to do could this be. This project has been very dear to my heart. Very therapeutic but then scrap booking is my therapy since I am home bound these days. Today at 12:18 pm (lunch time) marks another year without my daddy. He was a deputy that was killed in line of duty. Taken by a drug addict trying to escape. I miss him so much every day. To the world, time has passed but to me it might as well have been yesterday. We used to talk on the phone most every day at lunch. I was the last person (family member) he talked to. He hung up the phone went back to work and was gone.
The world goes on but my life seemed to kinda stop in a way. It hasn’t been the same and never will be. It seems particularly hard this year because we have had a lot of death this week. Bella has been asking lots of questions about death, heaven and about her papaw. She never knew him, But knows a lot about him. So this has been especially a rough time. I apologize If I have not been myself lately. I have been trying. But now you know why. There has been just A LOT going on! His birthday is next week so right now is just a rough time.This is always a rough time of year.

Right now I ask if at 12:18 p.m. central standard time (lunch time) If you think about it. if you would just take a moment to have a prayer/moment of silence but especially for my mom.
and all the officers and deputies and their families. all the service men out there risking their lives when they pull that car over. THEY NEVER KNOW who is behind that wheel and what might happen.

Think about that next time you are speeding also or go through that license check point Give them a smile. They never know what they are in for.
That could be someones daddy,

If You read this and it is after that time. That is ok. Just take a moment now and next time you see a Sheriff deputy thank him and his family for what they do. Tell him to be careful out there. Tell him you know someone else out here who appreciates them too 🙂 that really wants them to be safe.

Three Bugs In A Rug Spread Your Wings September Kit from Scrapbook Obsessions

OH MY WORD I love this kit from Scrapbook Obsessions. IT was the Purrrfect (see what I did there? HA!) thing to go with the (cats whose name changes on a daily basis) photos! I have been itching to scrap these photos ever since I have found out what this kit was gonna be!! IT was all I could do to contain myself. I have been just clicking pictures like crazy. SO GET READY! IT will be a feline Frenzy this month with this kitty I mean Kit. haha I did it again.

I stamped using these little maya road stamps and used prima bling to accent them. Rent those little birds precious?

I ran out of room after I made my big title on this page SOOOO I made a little journaling book on the bottom.

The journaling says:

With your allergies to pet dander it was a flat miracle, us keeping this cat. Your love for this cat is the reason we have kept this cat. You stayed outside with it from the time it showed up until we forced you to come in. When it was introduced to the backyard and your dog Guido, you were so worried. When it discovered squirrels and quickly chased one up this tree and perched itself upon this branch you worried more. It came down eventually with the help of some cat food and a growling tummy. You love this cat so. You love it so much you hug it and squeeze it and love the stew out of it. We wonder if it remembers this spot up in this tree because it might just want to go back there when you keep lovin? on it so much it hurts!

on a more somber note.
I was very saddened to hear that Bella’s Teachers mom had passed. She had been fighting cancer for some time. Bella has been praying for her for since school started. I hope Mrs. Brown knows that our hearts and our prayers our with her through this time and with her family. BIG HUGS for her. Bella is working on her a card right now. The glitter and ink are a flyin’

I MIGHT BETTER go check on this I think I just heard something meow and I KNOWWW she didn’t bring that cat in this house!!!