A couple of weeks had passed and
I had noticed a slight head tremor, again I bring this up to
the doctor and once again he tells me that this also is normal,
unless he is not coherent or having seizures he's fine. So,
again I trust what the doctor says and once again we leave and
go about our life.
At eleven months old , only hours
after receiving his DTAP vaccination I noticed a MARKED weakness
in his ability to hold his head up as well as sit unassisted.
As time passes, surprise surprise he is still not walking or
even crawling. At his next doctor's appointment, again I lay
on the table ALL of my concerns with Dylan, once again he excuses
my concerns and says "All children are different and he
wasn't crawling or walking by 15 months he persue more testing.
At Dylan's 15 month check up there was no change. Dylan isn't
doing either, crawling or walking, and has gotten worse with
head control and trunk support. I enter the examination room,
I hand Dylan into the Doctors arms and watch as Dylan folds
over like a sandwich. Finally, he turns to me with a look of
disbelief and despair and immediately sends us to Albany Medical
Center for testing, the day after Christmas.
At this point he gave us really nothing to go by or even to
expect, other than there was someting seriously wrong with our
child. Anxiety was running rampant among our family, I remember
feeling as though I couldn't breathe, scared to know what is
wrong with our perfect little boy. We stayed in the hospital
for three days and still no answers. After another month goes
by he receives an EEG, EMG, CAT SCAN, and a genetic blood test
where they come up with the diagnosis of spinal Muscular Atrophy.
As we stood in the neurologist's office awaiting the test results,
I am going out of my mind and feeling very unsettled. The doctor
enters the room and I could just feel the negative energy he
brought to that room and I knew that what he was about to tell
me wasn't good news. The doctor says" Ok the blood test
came back and his diagnosis is Spinal Muscular Atrophy."
Now, not having the first clue what that was I started with
a million questions. I will never forget that moment when I
asked " Is this a disease that can be cured?" His
response was "No, this is the number one genetic disease
that kills children." My whole self just felt like a mack
truck hit it and my whole world came crashing down in a heartbeat.
I held Dylan so tightly against me and dropped to the floor
and just rocked and cried what seemed like hours.
The next few days all I did was look into my son's innocent
eyes and cried. I couldn't possibly wrap my head around the
news that was slammed at me like a rock to the head. I couldn't
fathom the thought that my precious gift that was given to me
could possibly have his life shortened by such a horrible disease.
It took some time to let the fog clear, but I did pick myself
up and knew I had to begin " FIGHT MODE." Since that
very day I constantly knew in my heart that there is something
somewhere out there that can help save my son's life!! And from
that day on our incredible journey began to search and find
what I knew was out there........ I just had to find it!!!!
Our journey has been a long and bumpy road with a lot of ups
and downs........many hospitalizations, trying all sorts of
medicines, trying all sorts of alternative practioners, herbal
and homeopathic remedies( which all helped him in certain ways.)
I never gave up and continued to research to find the right
medicine or treatment that was out there. It was then that I
came across information on stem cell treatments!! I had a couple
of companies that I had in mind but I had to eliminate it down
to one......Dr. Feinerman!!!! I knew in my heart that this was
the best choice for my son through all the research I had done.
In April of this year (2009) we took the long journey to Lima,
Peru, where Dylan received two spinal lumbar punctures of umbilical
stem cells as well as his own that was harvested in Peru. The
experience was absolutely AMAZING!!!! The treatments went so
smoothly it was unbeleiveably stress-free! The medical staff
showed the most wonderful hospitality that we surely don't receive
in the states, the doctors ALWAYS were very informative on what
was going on or what was going to happen while being extremely
personable. The overall care that my son received was very sweet,
loving, and always out of love!!
Dylan is currently 4 months after his treatments and is showing
a marked improvement! His overall strength in his extremedies
has improved, increased muscle tone, he is lifting his legs
to his belly while laying on his back as well as kicking. he
has increased function as well as control of his fingers, bearing
more weight and most of all his confidence has flourished and
this is "PRICELESS" to me as his mother to see. We
are all so excited for the months to come with the endless possibilities
that are up ahead for Dylan!!!!
I REALLy want to thank everyone in Peru who had anything to
do with Dylan's care. Words cannot express how you have touched
Dylan's life in so many ways. Our lives have changed due to
your kindness and personal attention to every detail not only
physically but emotionally in understanding how important this
journey has been to us.We love you all and again thank you for
helping us save our son's life!!
I especially want to thank all of our friends and family that
have supported us no matter what. To my mom ....my rock and
solid pillar in times when I feel hope and joy will never come
again, you've always been there to help me back up. Mom, your
selfless acts have taught me more than you will ever know about
how to be a mom. To my husband, I know this has a been a rough
road to go down but.......we did it and we did it together,
I love you!!
My advice for anyone thinking about seeking stem cell treatment
no matter what the disease or illness......GO FOR IT YOU HAVE
NOTHING TO LOSE, ONLY ENDLESS POSSIBILITIES TO GAIN!!!! Everyday
is a new beginning and a gift for our son and for that we are
grateful!!!!
