Keaton Loses a Tooth!

Who doesn't remember this feeling?

http://www.youtube.com/watch?v=17j0sDmJ-1s

Divine Intervention

There have been some who have asked me, "How do you know Lana and her family?"  Truth be told?  I do not.  Not extremely well, anyway.  Not yet.  Whether one believes in it or not, I find the only phrase fitting to describe how Lana and I came into each others lives to be this; divine intervention.  Lana, her family, and their story inspire me to degrees unexplained.  In this life there are many, families and individuals, who struggle with different trials.  Life is filled with trials; we face them, and in most cases, overcome and accept them.

It is in such a trial that Lana has been gracious enough to tell me her story.  To share pieces of her world, pieces of her family, and in turn, some of the deepest feelings of her heart and soul.  The Weimer's story is one that needs to be shared; it needs to be heard.  I myself had never heard of SMA prior to seeing the youtube video Lana posted.  I never knew the impact it has on so many children throughout the world, nor could I have ever imagined what so many families endure when dealing with the disease.  It has been said that ignorance is bliss.  There is no bliss within this ignorance.  There is no current cure for SMA.  SMA needs to be better understood.  The fight for a cure against cancer is nearing daily because everyone knows about it, and people are doing things to help.
SMA must follow suit.

"Sunday a woman sitting by us asked me how old my baby was.  I told her he is 5 ½ months old.  She said, “Is he crawling?” and I responded, “No, he hasn’t been able to crawl.”  Honestly, I never know when to tell people more.  Do I tell them that my baby will never crawl?  He will never walk or even roll over because he has a muscle disease.  When do I just leave it with a short simple answer? 
No matter what I say, I am always left thinking.  
I think about how we are different, how much I love my kids, how amazing they are, and how sad it is that they cannot do what most kids can."

"Many times, especially when I was pregnant, people would ask, how many kids do you have?  That is another question I struggle with.  How do I respond?  Sometimes I say four.  Sometimes I say two.  I feel like I have four kids, I know I do, but I have two kids at home now.  I had four, and knowing there are only two now is a feeling I don’t believe I will ever get used to."


-Lana Weimer

Share the Weimer's story, and help the world understand.

5K Update

A lot of people have been asking about the 1K associated with the 5K for the kids.  It is free as long as someone within your immediate relation is a participant in the 5K.  The 1K follows a pathway that surrounds the park.  It will not be as organized as the 5K, but the access will be there for families with children in strollers, or wheelchairs.  For example, dad wants to run but mom doesn't and wonders what to do while waiting?  Mom can do the 1K with the kids and wander around, enter the raffle, and listen to live music.  Sorry for any confusion!  And KEEP REGISTERING!  Thanks, everyone!

Time for Weimer 5K

We are hosting a 5K Run, Walk and Roll for SMA and the Weimer family on August 11 of this year, 2012, at the Heritage Park in Farmington, UT.  Anyone is welcome!  There will be a shorter 1/2 mile loop for the little ones, and any adults that don't feel like running 3 miles (wink!).  We will have live music, hosted by the wonderful Karlie McKinnon (see this link http://www.youtube.com/watch?v=ZKHQHJfv4o8 ), as well as food and prizes.  Registration for the 5K is posted to the right, and all registration is done through active.com.  We will be making shirts for the event, so if you cannot attend but would like to order a shirt, please email Jessie Cloward at timeforweimer@gmail.com.  Any question/concerns may also be sent to that address.  Thanks everyone!

What is SMA?

Spinal Muscular Atrophy is a motor neuron disease that can present itself anywhere from birth to early adolescence, and in rare cases adulthood.  The majority of SMA cases are reported between the ages of 6 months, and 3 years of age.  SMA affects the voluntary muscles used for activities such as crawling, walking, head and neck control, and swallowing.  It is the most common "rare disorder" in children, and the number one cause of death between birth and age two.  Approximately 1 in 6000 babies born are affected, and 1 in 40 people are genetic carriers.  Sma affects muscles throughout the body, though the muscles nearest to the core are most affected (ie shoulders, hips and back).  Weakness in the legs is generally greater than in the arms, and feeding/swallowing can be affected.  When the respiratory muscles become involved, it can lead to increased risk and tendency for pneumonia and other lung problems.  The ability to feel and sense are not affected, and intellectual activity is observed as normal, or above average.  Patients are usually grouped into one of four categories.


For more information, see www.curesma.org.

Time is Running Out

"When our oldest son, Keaton, was 6/8 months old we could tell that he was weaker than he should be.  At 11 months he was diagnosed with SMA.  It is a horrible feeling to find out your child has a life threatening disease. When I became pregnant again, with Addison, we were able to get an amniocentesis to find out if she would have SMA as well.  The test was positive. We knew there was a 25% chance that each child could be born with SMA, but we hoped that the 75% chance of a healthy baby would win.  It didn't.
When we found out I was pregnant again we were nervous and excited.  We went in to get another amniocentesis and found out right away that although the baby did not have SMA, he had another disease called anencephaly and would not survive after birth.  I carried the baby, Eston, full term.  He was fine while in my tummy, but he died the day he was born.  We got to hold him for a little while before they took him away, and when they did, there came an emptiness and heartache that cannot be described.


Keaton and Addi continued to grow and fill our lives with joy, but Addison started to have trouble eating, and needed a feeding tube.  We thought that would help her to thrive, but her body didn’t take to it and she threw up a great deal.  She got very sick and was scheduled for a surgery to help her body accept the feeding tube.  She didn't make it long enough.  
Addi died one week before her third birthday.


Soon after Addi's death, my husband and I knew we wanted to have another baby, it felt right to us.  We knew the chances, but hoped that this time the 75% would win out.  We thought, "surely we will not have another baby with SMA."  The odds were still against us.
Our baby Bryce is 4 ½ months old now, he is a healthy chunky baby, but already showing weakness.  Keaton is 6 and every time he coughs or anyone around him coughs we tense up and feel so much stress.  We want to dedicate all of our time to keeping him and Bryce happy and healthy.
We love these babies so much, and losing them is very nearly more than we can bear.  Please help us spend as much time as we can with them while they are with us."


-Lana Weimer