Spinal Muscular Atrophy (SMA)


Hello.  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 don’t 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 fine people!

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 they’ve 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 out—having 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 mind’s eye.  I love them so much.  I didn’t 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 Mother’s 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 series) 

Thank you again for visiting my site.  Please come again!



Spinal Muscular Atrophy (SMA):  the parent and child nightmare

The diagnosis.  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 dread—and at THAT time I had no idea just how much devastation and heartbreak those letters would bring into my life.

“I’m 99% sure we are dealing with Spinal Muscular Atrophy,” said Dr. Kathryn Swoboda.  She is a neurologist at Primary Children’s 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 probe—actually a needle—is 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 shock—appalled 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 muscle biopsy.”

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. Swoboda’s 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 Mother’s 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 hadn’t 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 enjoy—but 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 God—“take 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 don’t 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 work. 

I walked out of the hospital with Nikolas in my arms—we 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 other.

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 Children’s 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 everything.

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 don’t want to see this, because I know that I can’t possibly do this, because I know that having to see my children suffer is simply not tolerable to me.

“Opportunity’s favorite disguise is trouble.” – Frank Tyger

I don’t want my children to be left out or left behind.  I don’t want them to miss out on the joys of childhood.  I don’t want them to be made fun of, and I don’t want people to feel sorry for them.

I just want them to have what every other child has.  A happy, carefree life.  And I don’t see how that is possible.  We are not concerned with things that don’t 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 other children.

Still, everyone is given their own trials in this life.  I can’t say that mine are any worse than anybody else’s because I don’t have to live theirs.  SMA is a harsh, devastating disease.  I wouldn’t 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 year—and 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 teach me. 

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.

Thank you.

The Winward Family
Kim, John, Ashley, Brianna, Nikolas and Gidget



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