I wanted to clear some things up about Peyton.  Like who she is to me, what she has and why she has to go through the things she does.  First off, I am Chris’s sister(Peyton’s father). Peyton is my niece and Godchild.  I love her as if she was my own child, and I would lay my life on the line, if it meant saving hers. I have made it my mission to find the cure for this disease.   Peyton has Spinal Muscular Atrophy, which is the leading genetic killer in infants under the age of two.  Now, if you have been on this site before you probable know what SMA is.  However, since this blog is posted on several other sites, I will give you a quick run down on what SMA is.  SMA affects the nerves that control muscle movement.  Peyton is four years old and cannot hold her own head up; she can make very small movement of her legs, but not bear any weight on them.  She will never walk.  She has very limited movement in her arms, and can’t hold anything much heavier than a pencil.  She can’t swallow, so as an affect now has to get her nutrients through a feeding tube in her stomach. She also can’t cough. She can’t sit up for long peroids of time, because she can choke on her secretions.  So, as a result she spends most of her time lying on her back or side.   It is taken for granted how many things we use our muscles for.  But when you see a child lose the basic functions over time, you become painfully aware.  She still has her smile (which is sometimes lost) because that also requires muscles.  Her ability to speak is greatly affected, because that also takes muscles.  Even though she seems like she a lot to say.   

Her mind is not affected.  She is a very smart little girl with lots to say, but it is limited because of her disease.   She is trapped in her own body.  Everyday we go through so many emotions about SMA.  Some days were are overcome with the heavy burden of sadness, sometimes it’s confusion, some days it’s guilt, today I am just pissed!!!!!!!!

When a healthy child gets a cold, the protocol would be some tissue, snuggle time and chicken soup to nurse them back to health.  For a SMA child, a cold means fighting for life or death. Because they can’t cough, and have extra secretions on a normal day, they are at a much higher risk.  The sick care protocol for a SMA child means extra suctioning from their nose and mouth.  When I say mouth, it’s not like going to the dentist when they suction you. No, this is down your throat into your windpipe…I can’t even imagine.  It means extra time on the cough assist machine, which pushes air quickly into the lungs and then pulls it out.  It means having to wear a bi pap mask 24 hours a day, just to be able to breath.  Now, all of these things happen on a “normal” day for SMA.  However, when they are sick…. it means a lot more of it.  Everyday an SMA child fights for life, so when they get a cold it literally could mean life or death.  We are not exactly sure what Peyton has right now, they have tested her for RSV and pneumonia, but the fact still remains, it could just be a cold. 

Another question that has been asked is why does she go all the way to Madison American Family Children’s hospital. SMA is such a rare disorder, and most children die before they turn two years old.  We are soooooo incredibly grateful that Peyton will be turning four in April.  We give a lot of the credit to Dr. Schroth, from AFCH.  She is the best Dr. in this area to treat SMA children, and the hospital staff is incredible knowledgeable with the treatment’s that are necessary for them.  Put it this way, today Peyton was taken to a hospital that was closer to her house. She was so unstable; it wasn’t worth the risk for her to be transported by car.   The Children’s hospital in Madison has an outstanding ambulance service C. H.E.T.A. that is set up to transport children like Peyton.  If you would like more information about C.H.E.T.A., please visit this link, http://www.uwhealth.org/pediatric-sedation/emergency-response-teams-cheta/10773   however, they are 45 minutes away.  So, Peyton was taken to a nearby hospital in order for her to get stable.  I was stunned by the fact the Peyton’s parents were the ones that were doing the suctioning, coughing and taking care of her, while three Doctors stood behind them doing NOTHING.  Why, don’t they do anything?  Simple, they aren’t trained how to care for a SMA patient.  Peyton’s parents are obviously stressed, scared and emotionally drained by just the fact of their child being in the hospital, but then they are also the ones that are responsible for keeping her alive once she is there??  It is mind boggling to me….

Things change so fast…. people say that all the time.  It really is true though!  Today was just a normal day, business as usual.  Then I received a frantic call from Peyton’s dad saying she was being rushed to the hospital.  I had just seen Peyton two days before that, and she was great!  However, last night around 4am, her alarms on her machines started going off.  Her heart rate was all over the place, and her O2 was low.  Over the morning Peyton’s mom and the nurses accessed the situation and decided that she should be taken in. It was rough when they first went in, but now Peyton is stable.  She made it through the transport well, thanks to C.H.E.T.A.  Why can’t she go in a regular ambulance?  Because they are not equip with all the machines that Peyton needs to survive.  The C.H.E.T.A service is, and we are so grateful for that.  Her heart rate is up, she has a temp of 101, and her O2 is in the mid 90’s on 8 liters.   She is going to have a rough night ahead of her, but she is in the best possible place now.   We will see what the next days bring.  Thank you for A.) Keeping Peyton in your thoughts and Prayers and B.) For letting me rant a little

Sometimes when I take a step back and take it all in…it takes my breath away.  That is why we must all fight and this is why I fight to save her.
Tina

Almost 4 years ago when Peyton was diagnosed, we were at a loss. We had no idea where to turn, what to do, and how to handle the news we received. The thought of Peyton not living to see her second birthday was something we were not able or willing to comprehend. The doctors were throwing such foreign terms at us, "cough assist machine, pulse ox, bib pap, g-tube"...and the list went on. All we could and wanted to focus on was Peyton. We wanted to spend as much time with her as possible, and suck in every moment, every smile, every facial expression, every small movement she made, because we quickly learned in the world of SMA, it could be her last.
Dealing with a SMA diagnosis is the hardest thing our family has ever had to endure and you can never be prepared for it. The financial burden that SMA places on a family could be just as devastating. Just some of the costs associated with SMA are:

- Conversion van with lift- $50,000 or more
- Cough Assist machine- $3,500
- Bi-pap/Vent- $3,000
- Power chair- $35,000
- Traveling costs to see SMA specialists and Doctors
- Ipads for Education $800
- Touch to Speak

Some of these items might be covered by insurance, however, some of them won't. We wanted Peyton to have everything she needed. She deserved it! So we started doing small fundraisers in our town for her, to help us fund some of these items. Three years later we have now created the Unite 4 Peyton foundation. Our mission is to raise funds to assist in medical research towards finding the cure for SMA, along with funding grants to families to help ease the burden of SMA. We have grown so much in these last 3 years, from our understanding of SMA, to meeting new families, becoming a part of the SMA family and now it is our turn to give back. We want to help new families and those who have helped us in the past. Our goal is for every child with SMA who wants an Ipad has one. To help every family that needs help with getting a new van or lift gate. If a family wants to go to the FSMA conference, but doesn't have the funds to do so, we want to help. We have been very fortunate, Peyton is going to be 4 in April, and she has what she needs. It was a struggle in the beginning, but we turned to the countless resources that are available to SMA families for help. We now want to give back and be one of those resources also. We are so grateful and blessed to have this opportunity to help!! Please if you are reading this, and you need help, or you know a family that does, pass the word. The very last thing we want a family with SMA to worry about is money. Now, can we fund every request that comes our way? No. Will we be able to buy your family a van? No. But, what we can do is help where we can and we will continue to work hard to raise money to do so.
Sometimes it is so strange to me, to think back to three years ago. From our complete devastation and loss of hope, to now. We have learned that through every situation, every obstacle, something positive can come out of it and we are proud to be a part of it!!

Peyton has been under the weather lately, it started late last week. Everyone has been working hard to help her recover from this latest round. Her heartrate and oxygen levels have been up and down.  Lots of prayers have been coming our way and we thank everyone for them. On a brighter note.... A new friend has come into the house, it is a hamster!!  The girls just love it!   

I just wanted to share about Peyton's day yesterday. She was so focused, and so involved for the entire afternoon, and she was really using her muscles!
We had her involved in a variety of sensory activities...."ice skating" with her feet in shaving cream (wow! she was really moving her leg muscles!)  and fingerpainting while in the stander. Again, she was really engaged in doing her work with her hands this time.  Finally, during snack, she chose a "banana split" lollipop, and was independently holding it and raising it to her mouth. Lots of language for the afternoon as well. Way to go, Peyton! I am continually impressed by her skills and desire to show us what she can do!
 

  It's 1:12 in the morning on a Wends. and I am up working on Peyton's site. We are getting ready to start planning the 4th Annual Par 4 Peyton!! The date is set, the Golf Course is booked and the ball is rolling. I almost feel like we just finished wrapping up the loose ends from the 3rd annual. I am going to admit....it is hard work...it gets frustrating at times...and sometimes I think to myself "I can't do this again next year" But Every year, when we hold Par 4 Peyton my heart is touched. I am touched by the support of so many. The thought of so many people coming together to help find the cure for this devastating disease is amazing. With that support I get my strength to do it again!!
So, here I sit at 1 in the morning, filled with excitement and hope. I know that this year is going to be the best EVER!!! I have so many great things planned and some new ideas to try!! So many businesses are involved and even though it's January we already have teams wanting to reserve their spots!!!
I can't wait to see what comes along our path on this crazy adventure. If you would have told me 5 years ago that I would be running a foundation and planning charity outings, I would have said your nuts. But then in 2008 Peyton was born, and we all were forever changed. She has taught me that anything is possible, with hard work, hope and a lot of prayers!!!

Jan. 17, 2012

Dear Mr. Bob Marshall,

... Before you read this letter, please take a look at the date. 2012- in 1865 slavery was abolished, in 1870 blacks were grated the right to vote, 1920 women were granted the right to vote, and now in 2012 there are 6 states that legally recognize same sex marriages. Now, let me take you to July 4, 1776 when our founding fathers drafted the Declaration of Independence-

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

Let me bring you to Feb. 2010, were you made this statement.
The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children,” said Marshall, a Republican

I understand that you have since then tried to recant your statement, or change your wording. However, you as a representative of the people of Virginia should be ashamed of yourself for speaking such vile, hateful and discriminatory language. In that moment on Feb. of 2010, you were not speaking for the people of Virginia or America. You sir, were speaking for yourself and your discriminatory views.

It is obvious that you do not have, know or have ever come in contact with a disabled person. Which I find strange, since there are pictures of you on your website with disabled children. Were those shot for promotional reasons only? Did you use a green screen and just photo shop children in there? Because, if you had actually come into contact with those children you should have learned far better from them.

Spinal Muscular Atrophy, the leading genetic killer in infants under the age of two. This is what my niece was diagnosed with in 2008. She was born to a loving family, to a mother who did not a previous abortion. So how could that have happened? Why would nature take a vengeance on this family? I do believe that you should educate yourself more prior to speaking publicly. You’re a politician, you should be speaking of laws, rights, freedom, not about nature. You know nothing about how nature works.

Let me tell you what I have learned from my niece Peyton Elsner and all the other disabled children, and adults. I have learned acceptance, respect, and gratitude for what you have. I have learned undying love and that you can truly have a scar on your heart that will last a lifetime. I learned to cherish every moment that you have and to be grateful for them. I learn from her everyday! I am so grateful that she is in our lives. She has already changed the lives of so many for the positive. Which is what you should be doing, Mr. Marshall, making positive changes in this world, not spreading hate.
Peyton is now 3, she has beat the odds. She can not move her arms, legs, or hold her own head up. She has to eat through a feeding tube in her belly, and her life depends on many machines that she uses everyday. However, everyday she is happy and loves life.
The odds are against her because of her SMA. She surely does not need people like your self against her also. So, if you have time in between all your press conferences, socialite dinners, and campaigning, please take a moment to educate yourself about disabled children. We would appreciate it.


www.unite4peyton.com

Sincerely,

Tina Reddick
Greenfield, WI

It has been a long time since we have put up a blog about Peyton.  But is about time we get back to it.  Peyton is growing like a weed!! She is getting very tall, like her dad.  She has been pretty healthy this winter, (knock on wood).  Minor colds here and there, but everything she has had her parents were able to deal with at home.  She is really starting to talk a lot.  She can say many words, when she wants to.  However, when she doesn't want to talk, she won't!! She has a fiesty side to her!!  She is working really hard at expanding her vocabulary, and is loving the indepence that she gets from being able to "speak up" for herself.  She also started school in the fall, which has been  amazing!!  She attends 3 times a week, and her nurse goes with her, along with her own private driver!  ( She is a little celebrity)   To watch her grow up and start doing things on her own is such a great feeling for her family.  She loves school, and has been adjusting to her new routine really well.  The teachers at her school are great with her and we know she is well taken care of. 
We are coming up on her 4th Birthday!! We know that it will be filled with many hugs, kisses and smiles.  We can't wait to celebrate it with her and continue to watch her turn into such a wonderful girl. 

    


Words can not describe our gratitude........for all of you who contributed to making the 3rd Annual Par 4 Peyton such a huge success!!!! We are overwhelmed by the outpouring of support from family, friends, and strangers. It is truly amazing!! With so many changes this year (from a location change and a date change) we were not sure how well the turn out was going to be. We could not have asked for anything more!! It was like we never changed a thing. We had so many great donations this year, and we even auctioned off an "original Peyton" artwork piece that was professionally framed and included a lock of her hair!! It went for over $500!!!

So many people help to put this event on every year, and we appreciate it from the bottom of our hearts. With out the support from those involved in the Par 4 Peyton and Unite 4 Peyton Foundation we could never put on such an event! We hope that everyone knows their donations have helped so many children affected with SMA and will continue to do so for a long time! We were able to donate and I pad to a child affected with SMA from Canada. We also made several large donations to organizations that support SMA research. Thank you again!!! We look forward to seeing you soon!!!!

I am getting ready to be on The Morning Blend tomorrow with Chris ( Peyton's Father).  I am getting really nervous, because this is taped live!!!!!  We are so blessedd to be able to have this wonderful opportunity!!  I hope that we are able to spread awarness and make others aware of Spinal Muscular Atrophy.   SMA, is such an unknown illness, but 6.000 babies are diagnosed with it every year.    Par 4 Peyton is coming along great! 

Today we were blessed to have Kaela from Peapod Photography come over and take some pictures of Peyton, Kylie and Chris.   The girls did wonderful, and the pictures came out great!  Kaela is such a great photographer, I really can not say enough about her. 
We are all set to be on The Morning Blend!  I submitted the final paperwork tonight,  and we included some of the photos that we took today!!  I am really excited and nervous!!   What a great chance to spread awarness of SMA!   Spreading awarness is key.