My Story
(as told by Mom)

On December 21, 2001 Jerika Jenae Lynn Bolen, AKA ‘Cocoa Butt’,  entered the world a healthy 6lb 2oz package that brought a light to my eyes I had never experienced before.  I remember days upon months just gazing at her beautiful face and thanking the Lord for something so precious.  This girl changed me in so many ways…all for the better.  I have found a new brightness in the world while my family has only grown closer because of her.

Besides being born with an extra finger, she was nothing short of perfect to me. In fact, I was sure she would make the big “goal” I had for her and be walking by 9 months for my birthday in September.  She rolled over within 2 weeks and stood at a few months old with her hands being held.

But 6 months later, things started to change and they changed fast.  Jerika had made it as far as to get into crawling position and soon her arms were giving out.  She couldn’t sit up by herself and things just didn’t seem right.  Everyone said it was because she was small and “don’t worry, she is just going to do things later on”.  As I watched my child grow weaker, I finally decided I needed to figure out what was going on as deep in my heart, I knew it was more than the fact that she was just small. 

So, we were referred to a physiatrist who checked her reflexes, etc. and couldn’t find anything in particular that seemed unusual.  Her thoughts were that either Jerika had a tumor on her spine causing the lack of movement, or she had one of many neuromuscular diseases.  The very next day, we made the trip to Milwaukee Children’s Hospital for an MRI of her entire spine.  As I watched them strap my 8-month-old crying baby on the “stretcher” and cover her face with this Jason-type mask, I just about lost it.  Little did I know, this was only the very beginning of the pain we would go through together in our journey.  After giving her some sedating medicine on her pacifier, she finally stopped crying and they put her into the machine.  The next 3 hours were the most

nerve-wracking for me, and luckily, I had the support of my cousin and her son to get me through.  By the end of the day, the neurologist met with us and said the preliminary results of the MRI are completely normal and as we further discussed things, he brought up the 3-letter word that I had never her of in my 27 years, but would come to know all too well very soon---SMA.  By the time Jerika was 11 mos, we finally got the phone call back on the blood tests and “yes…she has tested negative for the …….gene..on Exon 7…..so she has Spinal Muscular Atrophy” is about what I heard on my end. 

Our lives began to metamorphisize before I had the time to realize it. We spent the first 2 weeks immediately after diagnosis in the hospital, including Jerika’s 1^st birthday and Christmas,  going through a swallow study and other tests while awaiting surgery to place her feeding tube as I was told I was “starving” my baby.  She did not have the strength to swallow the food she needed for nutrition.  The feeding pump would be the first of many pieces of equipment we would become familiar with over the next several months.

I soon was forced to quit my job (or eventually get terminated for lack of attendance) and we quickly moved 2 hours north to be near my family (my parents and sister).  I wasn’t sure HOW I would ever find the way out of this dark new “life” we were given, but I knew without family, I didn’t stand a chance.

So, I got to work on other things.  I soon decided I wasn’t going to sit back and just LET my daughter die like they explained to me was inevitable.  I was not going to lose the one thing in my life I treasured more than I could have ever imagined. So I searched the internet and read for hours on end about this terrible disease trying to find the light at the end of the tunnel while praying to God to spare my daughter.  I was all eyes and all ears but the information seemed limited.  Being the #1 genetic killer of children under 2, how can so many people NOT know about this disease and why did the doctor act like it was all over and  just say he was ‘sorry’…and sent us on our way without a glimmer of hope, no where to go, no possibilities at all???? 

It grew difficult once the reality if diagnosis sunk in and I will be honest and say I have had my share of weak moments.  The surgery took a lot out of Jerika and it seemed she lost the majority of her strength in the matter of a few months.  It is hard to this day for me to watch children running and jumping and riding their bikes and knowing my daughter will never have “my walk” or know how it feels to jump.  It  is harder some days then others.  But most of the time, I try to live by the title of a book I found …”You Will Dream New Dreams”.

Though Jerika is very limited in what she can do physically, her spitfire personality and mind of a small genius amaze me daily.  She is far beyond all cognitive milestones and 3 months prior to her 2^nd birthday, she tested as above a typical 4 yr. old for speech.  And her personality is what makes me feel like the proudest Mom in the world.  She is like the engine of the train when we are out in public and collects a bunch of “cars” behind her constantly.  I see how she brightens the faces of the elderly who are slowly making there way through the store with their walkers as Jerika whizzes by in her wheels.  I believe she could be the first celebrity “stand-up” comedian in a wheelchair.  I know it is only a glimpse of what my daughter is going to contribute to the world.

SMA is a very humbling disease, and it has shown me just how precious each and every

moment is.  It has also connected us with some of the best people society has to offer on-line at www.smasupport.com.  There, we have found our extended family and the one place I can go and know that everyone there really knows what it’s like to be in our world.