Spinal Muscular Atrophy (SMA)
My name is Kim Winward. Thank
you for visiting my website! I
hope you will take a moment to sign my guest book.
And I hope you will learn something about SMA and then tell
others! It is so important to spread the word! And please visit often for updates!
I feel very blessed to have such
a wonderful and lovely family! Each
of my children is special to me. Each
brings their own gifts and their own special touch to our family.
I cannot imagine life without any one of them! Two of them are afflicted by a disease called Spinal Muscular
Atrophy (SMA). All of us
have been touched, and changed, by SMA.
This website addresses the
important topic of SMA, but I dont want anyone to think that my SMA
children are more important to me or to our family than are my
non-affected children. I do
want to tell my SMA story. I
want to make people aware of SMA and what a devastating and harsh
reality this disease is. (SMA
is the number one genetic killer of infants and children under the age
of two!!) But I also want
to share all of my family with everyone so they can see each member as
an individual and realize why I am so proud to be associated with such
Each child has a place of
unconditional love in my heart. Each
one is important to me in the way that only mothers and children share.
Each one is my hero in his or her own way. I have room for all of them in my heart and in my soul for
always. I will love them
even when my life here has ended. My
love and care and concern for them will be here long after I am gone.
Real heroes are men who fall
and fail and are flawed, but win out in the end because theyve stayed
true to their ideals and beliefs and commitments.-Kevin Costner
Brianna and Ashley are my
first-born children. Having
twins to begin with was hard. There
was so much to do and to learn! We
were always the center of attention when we would go outhaving two
such beautiful babies that did not look anything alike attracted many
people. I hold so many fond
memories of them in my heart and in my minds eye.
I love them so much. I
didnt know if I could ever love someone as much as I love them.
Then Nikolas came along. He
was such a beautiful boy. I
got so many compliments about him.
And I found that the Mothers Love that has always been present
with the girls was there for him also!
He was so sweet and so intelligent, and such a joy to have
around. (He said his first
word at 6 months, ball). He
inspired me, and I wanted
another baby. We were
ecstatic when we found out that we were pregnant again!
And even though we were going through some very trying times
during my pregnancy with Gidget, I wanted her and I loved her then, but
not as much as I do now!
SMA has become a very real, very
prominent part of our lives. It
is not something we wanted, but something we have had to accept and grow
with. I think that each of us, if given the choice, would vote to
ban SMA from life. However,
that is not a choice that we get to make.
We only get to make the choices that affect us, that will help or
hinder us as we go on our way in this life.
And it is, after all, our choices that show what we truly are,
far more than our abilities. (JK Rowling from the Harry Potter
Thank you again for visiting my site. Please come again!
Muscular Atrophy (SMA): the parent and child nightmare
Spinal Muscular Atrophy. SMA.
Werdnig-Hoffman disease. It
was like hearing a foreign language.
The words were going into my
brain and I was doing my best to understand them.
Spinal . . . has to do with the spinal cord.
Muscular . . . obviously dealing with muscle.
Atrophy . . . atrophy? . . . that could not be good!
I was searching my brain, reaching for all those college classes
trying to define atrophy. For
me, the word conjured images of petrified wood.
Wood that was pretty to look at but basically useless. Atrophy, to the best of my recollection, means to atrophy, to
turn hard, to become useless. Surely,
this could not be referring to my beautiful little blonde son!
Spinal Muscular Atrophy. I
had never heard of it, and I am fairly well versed in medical
conditions. In fact, nobody
I knew had ever heard of SMA. Those
three words, those three letters, filled me with a sense of impending
doom, terror and dreadand at THAT time I had no idea just how much
devastation and heartbreak those letters would bring into my life.
Im 99% sure we are dealing
with Spinal Muscular Atrophy, said Dr. Kathryn Swoboda.
She is a neurologist at Primary Childrens Medical Center and
an expert in the field of SMA.
This pronouncement came after
living through a horrible ordeal called an EMG.
An EMG is something you want to avoid in this life if at all
possible. During an EMG,
the child is hooked up to a machine that measures response to stimuli.
Shocks of varying intensity are then administered to the hand and
arms and the response is measured.
Next comes the lower extremity testing.
A probeactually a needleis inserted into each muscle in the
leg and response is again measured.
At the time Nikolas was tested, no anesthetic was given.
(I understand that this has changed now, and thank the merciful
heavens for that!!!) I held
him as he was poked and prodded and measured.
He screamed and cried and thrashed about trying to escape until
he fell asleep, limp and exhausted, in my arms.
I was in a state of shockappalled at the testing procedure,
and I hurt for my little boy.
Dr. Swoboda continued, We will
need to have some blood drawn for testing, and we may need to do a
We proceeded from her office to
the lab area, where it took 3 different phlebotomists and a threat of
bodily harm to get the blood drawn.
Nikolas had his feet poked and squeezed repeatedly in an effort
to find a good vein. During
this time I became absolutely determined that no further harm would be
done to my precious son. If,
after this torture session, they were still unable to reach a conclusion
as to what the exact problem was, Dr. Swobodas 99% surety of SMA
would simply be accepted. There
would be no muscle biopsy. (The
blood test did end up showing positive for SMA.)
This was on Monday, the day after
Mothers Day, 1999. I was
5 months pregnant. I was
alone. My husband was unable to take the time off work to accompany
me. My mother-in-law had
offered to come with me, but I hadnt known what I was in for and I
told her not to drive all the way from Idaho.
Now I was wishing I had asked her to come.
I was caught totally off guard.
Nobody can EVER be prepared to hear that their child is being
diagnosed with a life threatening condition or any type of debilitating
disease. This is just not
supposed to happen. If
something bad happens to us as parents, it is not a good thing, and not
something we enjoybut it is so much better than having something
happen to a child!
I wanted to curl up in a ball and
not face another person ever. I
wanted to cry and pound on something, anything, until I was too
exhausted to move. I wanted
to mourn for my little boy and for all the things that he would miss.
I wanted to run and scream and make it go away. I wanted to barter with Godtake whatever you want from
me; remove me from this life if necessary, but let my Nikolas be whole;
let him enjoy this life; let him be able to run and play and chase
butterflies just like all the other children; please dont do this to
my child!!! I wanted to
break down right there, right then and be physically, violently ill.
I wanted to turn back time by some magical spell and have this
all not be true, not be happening.
Instead, I calmly
thanked the doctor and the lab personnel.
I called my supervisor and told her that I would not be in to
I walked out of the hospital with
Nikolas in my armswe were both crying, silently, the tears streaming
from my face and mingling with the ones on his.
I drove, somehow, out of the
medical center parking lot and onto the freeway.
I remember thinking that I would probably get pulled over for DUI
because my tears were blinding me, choking me as I drove.
I am not sure how I got home, but I know that I arrived there
safely. I did not want to
see or talk to anyone. I
did not want to deal with anything or anyone.
My friends from work called. They knew that I had been at the medical center for testing.
They knew that I was due in to work and that I had called in
sick. They knew that I was
hurting, and they were concerned about me and about my family.
But I could not talk to them.
I simply was not up to it.
I told my husband in monotone,
monosyllable words that Nikolas had been diagnosed with Spinal Muscular
Atrophy, that I was unsure at that time exactly what that would mean for
all of us, and that I was not able or willing to discuss it any further
at that point. We have never actually sat and discussed it beyond that
point. He asked me at that
time, How does that make you feel?, which I declined to answer.
Somehow neither of us has been able to speak about it with the
John, my husband, took Nikolas
and went to the home of some friends.
We had been invited there earlier for a barbeque, and they also
had the older girls babysitting them for us.
I went to my room, turned off the phone, got in my bed and
covered my head with a pillow. I
wanted to stay there like that forever.
I wanted to pretend that the whole day had never happened.
I dreamt of my little boy walking to me.
I thought back to my pregnancy
with Nikolas. From the time
I realized I was pregnant I knew that I was carrying a boy.
And I knew that his name would be Nikolas John. We
were so excited! The girls
were 6 at the time, and we had begun to think we would never have
another baby. This was such
exciting news! The
pregnancy was normal, and my boy was due on Christmas Day.
I went in for my regular check up on December 16 and the doctor
heard a slowing of the heartbeat. I
was admitted and gave birth the next day.
My delivery nurse was my sister-in-law, and it was (and still
is!) her birthday also! Everything
seemed to be in order. Nikolas
grew fast. He was a big kid. He
sat up on schedule and crawled at the right time. We began to notice a slight trembling in his hands when he
would wake up from naps or nights.
He would pull up on the furniture, but only to his knees. His crawling became slower and took on a strange gait.
At his 12 month check up John mentioned these concerns to the
pediatrician. We were told
not to worry. He was mostly
likely hypoglycemic and just a late walker.
He was also big and it might take him longer to be able to
support himself. By 15
months he had become basically immobile, and we knew there was a bigger
problem. Our primary care
pediatrician referred us to a neurologist at Primary Childrens
Medical Center. He then referred us to Dr. Swoboda.
Kathryn Swoboda is an expert, not
only in neurology, but also in the field of Spinal Muscular Atrophy.
She is also a very nice lady.
She told me as we were finishing the EMG that she had a son about
the same age as Nikolas, and that performing the EMG on him had almost
broken her heart. This
doctor knows her stuff, but she is also very personable and very
supportive. She knows SMA and the SMA community. She is constantly working to cure SMA, and wants to establish
an SMA clinic here in Utah. I
am grateful for medical professionals such as Dr. Swoboda.
She advised me to contact my ob/gyn and arrange for an amniocentesis as quickly as possible. (My unborn baby should be tested for SMA). Although she does not advocate abortion herself, Dr. Swoboda wanted me to be fully informed and to be able to make my own choice fully armed with knowledge.
I knew, somehow, before the
results of the test came back, that my baby girl would be affected with
SMA also. I am also not an advocate of abortion. But I had to consider that option. I went through a very long process of deciding and asking
myself about a thousand questions:
did I have the right to bring a child into this world knowing the
extra obstacles she would face? On
the other hand, what gave me the right to kill this child by abortion
just because of those obstacles? How
would I explain my choices to my family?
How would I really ever know what the right choice was?
What would be the effect on the entire family to bring this child
into the world only to lose her to SMA complications? The moral questions, the ethical questions, the religious
questions, the family considerations, etc etc.
These are not easily made choices, and they effect so many more
people than we realize!
Gidget is almost 18 months old
now. She is beautiful and
wonderful, like the others, and I cannot imagine life without her!
She crawls and pulls up and does some cruising.
We think and hope and pray that she will be able to enjoy walking
at least for a time. She is
a joy to all of us and she makes us smile with her happy excitement over
I remember reading in the
scriptures (the exact reference escapes me) that God requires a broken
heart and a contrite spirit. I
am not sure how one goes about measuring how contrite a spirit is.
But I know that I have a broken heart.
And if I knew how to go about it, I would probably consider
selling my soul to have this removed from the lives of these innocent
children, and from my life (except that I have come to realize that if I
were to sell my soul what a disappointment I would be to them!).
I also know that I forgot (temporarily) on that dreadful
diagnosis day, that they are also His children, and He loves them too.
He is not asking any more from them than what they valiantly
volunteered for in this life. Yes,
it is hard, for all of us. But
beyond it all we have to see and know of His everlasting Love for each
of us! And who better knows how it feels to watch a child suffer,
and even die, here?
People tell me that I am strong. That perhaps I was given this trial because of my strength.
And you know what? They are right. I
AM strong. I am a very
strong person--a person who thinks herself immune to basic human
emotion. I have been to
hell in this life and come back to tell my story.
And because of that, I am strong.
Strength is not MY problem.
But it is a problem for my son, and most likely for my youngest
daughter . . . hence the broken heart.
My heart breaks every day as I watch them and know the things
that they are missing. I
want so badly for them to be able to stand up, to walk, to run, to do
the normal things that we all take for granted.
Sometimes when I have to walk up a flight of stairs for the umpteenth time in a day, I will think how tired I am of walking up and down stairs. Sometimes I will complain loudly. Then I will think how happy Nikolas would be to be able to walk up and down stairs or run an errand for someone, or even just look out the window on his own. And then my complaints seem awfully silly and petty and somehow selfish. How can I be so tired of doing these things that I know my sweet little boy would give almost anything to be ABLE to do? How can I complain about my life when living with him and seeing the things he misses?
I look out my window and see the
other neighborhood children playing, running around, playing tag,
jumping up and down, swinging and sliding and other games . . . and then
I wonder if I really am a strong person.
Because I know that I dont want to see this, because I know
that I cant possibly do this, because I know that having to see my
children suffer is simply not tolerable to me.
disguise is trouble. Frank Tyger
I dont want my children to be
left out or left behind. I
dont want them to miss out on the joys of childhood.
I dont want them to be made fun of, and I dont want people
to feel sorry for them.
I just want them to have what
every other child has. A
happy, carefree life. And I
dont see how that is possible. We
are not concerned with things that dont normally even enter the minds
of others. For instance,
the vulnerabilities that a wheelchair brings:
what if it storms and the battery dies and he cannot get to
shelter? Are there snow
tires available? How much
extra flack will he take and how much more accessible is he now to the
bullies? And other concerns
as well: help needed with
taking books in and out of desks and back packs; transfers from desk to
chair and back; losing balance in chairs and the end all be all
complaint: teasing from
Still, everyone is given their
own trials in this life. I
cant say that mine are any worse than anybody elses because I
dont have to live theirs. SMA is a harsh, devastating disease. I wouldnt wish it upon my worst enemy, and I would gladly
give it up should a cure come about.
I hate SMA.
I hate SMA with a virulence that surprises even me.
I always thought hate was a bad thing, but to direct it at
something as evil as SMA is good. I
will continue to hate SMA as long as I live.
I will continue to fight SMA with every power at my disposal.
I would love help from anyone out
there who feels that they can help in any way.
And everyone CAN help! Even
if it means just telling a friend or two about SMA.
Learn about SMA. Talk
about SMA. Join Families of
SMA, or make a contribution to research.
If you know someone who owns or manages a business, mention that
donations to SMA are 100% tax deductible, and refer them to an SMA
connection! Please, there are thousands of innocent children dying out
there each yearand each person can help, if only they will.
We make a living by what we
get, but we make a life by what we give.-Norman MacFinan
I have such admiration for my
children, each of them! I
admire Ashley and Brianna for the amazing way they have dealt with this
entire situation. They have had to give up much attention for themselves, and
they have been totally self-less in helping out around the house and
with the little two. Brianna
is always willing to entertain and to keep both of them laughing!
Ashley is great to carry them around from place to place and get
them dressed! The younger
ones have much to learn from the examples set by their older sisters. They will do well to become such good people as these two
are. I admire Nikolas for
his cheerful attitude in the face of such obstacles!
He is unfailingly happy and smiling and reaching out to others
each and every day. I know
I would never be able to be so happy and so nice and sweet in the face
of the problems he has to deal with!
I admire Gidget for being such a happy little soul and the only
girl I know who is cute enough to carry off the name!
She has a strong will, and I hope it will serve her well.
As another parent said, No
matter what happens, no matter how bad SMA can get, you never regret
having had the privilege of meeting this beautiful soul in this weakened
body. This child is as
close to an angel as we will probably ever see.
From a song by Alabama, I
believe there are angels among us, sent down to us from somewhere up
above. They come to you and
me in our darkest hours, to show us how to live, to teach us how to
give, to guide us with a light of love.
I love my children, my angels, my
helpers in this life! They
are my strength and my comfort. They
are my life, and I thank God that He entrusted me with such valiant
spirits. I hope that I can
serve them well and teach them even the smallest portion of what they
And I hope, always, that the cure
on the horizon for SMA will come to pass in my lifetime and theirs.
I hope and pray that this wondrous medical miracle will be of
help to my children and to all children.
Please help me in my endeavor to
teach all people about SMA and to get some help financially for those
doing SMA research. People
suffering from all neuro-muscular disease will benefit, and the world
will be a better place.
The Winward Family
|View My Guestbook||Sign My Guestbook|
Supported by SMA Support.
All the backgrounds
were created by photographs that are copyright Anne
Nothing on this site is for sale and is meant solely for purposes of information.