Tuesday, June 7, 2016

Living with Spinal Muscular Atrophy- Outraged and Saddened In Pontiac, IL

 Pontiac, IL
I am so upset. Lizzy's van was vandalized for the second time in less than a week. Three tires now slashed and unfix-able. Two were brand new and the other one was less than a year old.  Its cost around $300.00 just to fix two and we are just can not afford getting more tires right now.

Lizzy as a sweet innocent child that is 12 years old that was not supposed to live past 2 years old. She has been through so very much and comes out like a champ. We take excellent care of Lizzy.
Why would people single her out in a town of almost 12,000 people. We do not bother people. We are good people. We do not take advantage of people and we mind our own business. What would cause a human being to commit this crime?

Sorry, for the rant but , I am so mad!  Was it a  narcissistic relative with a vengeance against us, a kid just being a deviant or a x boyfriend of her mother's getting someone to send her a message? We will find out who the person is.
I have lived here most of my life and I have always loved it here. We pay our bills, keep our lawn mowed and never bother anyone. Its just so sad!! How could anyone do this and not feel guilty?

Thursday, March 10, 2016

Losing a parent- Living with Spinal Muscular Atrophy Type 1

My dad passed this morning at age 81. I have been seeing him almost every night for a long time the last few years. I got to know this man so well. I will miss him so much. He was my last parent. I have lost 5 loved ones in 4 years.
Dad you are now at peace. No more pain and you are with the love of your life. I learned a lot about you these past years and I think I helped make some your days better on this earth.
Love you so much!

Friday, February 19, 2016

Update and Rare Disease Day February 29, 2016 / Living with Spinal Muscular Atrophy Type 1

Many times common symptoms hide underlying rare diseases, leading to misdiagnosis and improper treatment at a later stage

Almost half of rare diseases do not have a specific foundation funding or advocating for the disease.

Spreading awareness about rare diseases can help contribute to increased public knowledge, support for clinical trials and scientific research, and development of new diagnostic and treatment procedures.

80% of rare diseases have genetic origins

Rare diseases case 35% of deaths in the first year of life in infants

Those fighting rare diseases also face high cost of healthcare that requires visits to specialists and uncommon procedures that are not always covered by insurance.

95% of rare diseases have NO FDA approved drug treatment
Half of people diagnosed with rare diseases are children. 

Long over-due update -

Sorry, Its been so very long!!
Its been some rough times and been some great times this past year.
We have had some miracles and we have had some disappointments.
We have lost a great friend named Bernie that broke our hearts.
We had three births last year, Lizzy had a new baby brother and a new cousin born 6 days later.
We had a terrible flood in December and my son in law and his best friend almost lost theirlives trying to get my daughter Dawn and her family out of their flooded home after the levy broke on lake they live,
My dad had been very ill and a terrible time at one nursing home and got him into another.

Makes you wonder how we got through it all. The answer... faith and the love of family.

Just wonder sometimes what will happen to our family when I am gone. Who will fight for the the rights we deserve? I take it upon myself to make sure everything is okay.

Dealing with my dad has been the hardest. One day he is thankful for me being around and the next just a ripping on me for being involved. Does he want me there? Does he really mean those things he says yo me? Is he just in pain or does he really mean it. He gets Dementia when he is sick or in pain sometimes. That is so hard to watch.The hardest part is his incontinence. Is just plan sad. Is getting old a blessing? I am his caregiver too when I see him besides Lizzy's Its so hard at times and emotional.
 I want to be strong and able to function when I am his age. How do we ready ourselves for old age?

Lizzy doing well. Turning into a young woman. She has lost some strength but working on ways to help her get that back. Not bad just a few things causing her difficulty. She is too honest, too mouthy and one of my precious gifts. I need to be around to help her as long as I am able.
Just wish I could stop the age clock for all of us and just chill for a few years!! Need to get caught up with just daily things I have missed since so many things have went on this past year.

                                                             Lizzy and her new brother!!

"We believe in miracle because we live with one!! "

Monday, August 24, 2015

A long over due update- Living with SMA

August is SMA awareness month. Here is a picture of Lizzy and her friend Kyla.
Lizzy is my hero.
I have not posted in so long and I apologize. I have been so busy these past few years its hard to even find 15 minutes to just sit down and post.

My dad has surgery again tomorrow to remove skin cancer on his arm. Its supposed to be routine but when you are 80 years old nothing is routine. Add him to your prayers please.

Lizzy has been doing great except for her sassy mouth at times. She is the worst when I am doing her last treatment before bed. I do not know where she got the mean streak but, I do not appreciate her attitude and how she thinks she does NOT have to do treatments at night. I make her pray after she does this and ask God to help her not be so mean. Not sure what causes her sweet demure to turn into a smarty pants little stinker at night. It will stop or her mother can do her treatments. She is beautiful and a great kid the rest of the time. I guess "Welcome to preteens"

My family has been cleaning my dad's house out that had 5 generations of stuff in it. We have found a lot of cool stuff, creepy relative pics from the 1800s, dust and a lot of junk. My gosh this has been the most over whelming experience in my life. Its been just 6 of us doing this. I mean this house was packed from the basement to the attic. We cleaned this out without central air in 90 degree weather. It literally kicked my hiney. I lost 12 pounds in a week and I believe it was from all the work I did!  You find out a lot about people when it comes to hard work. The ones who show up and the ones who has better things to do. Sad, but very true. Almost done. I am amazed of the work we have done and how much has been done.

I was upset last night as I watched a child with SMA dying on facebook. It tore my heart out I could not watch it anymore. The sweet little guy earned his wings this morning around 7am. How could a mother record her baby dying? Some people are "social media' Crazy. All I could do was pray for the little guys so he did not have to suffer. Not everyone thinks like me or feels like I do . I fight for my kids and grandkids. They are gifts from God. To watch them just die and do nothing is to me a terrible sin to me.  Fly high sweet boy fly free from your suffering.

Summer is almost over and fall is sneaking up. Where did the time go?
Lizzy's mom is expecting a baby boy in November. Kolton Paul Huette will be his name! Lizzy is excited! He is SMA Free!

Thank you to my friends for keeping up on us and sorry again I have not updated sooner.

"We believe in miracles because, we live with one!"
for info about Lizzy in her earlier years  please read Lizzy's website

Wednesday, January 14, 2015

"The World Loses a Voice of Compassion, Strength and Love"- Living with Spinal Muscular Atrophy Type 1

My heart is having a hard time dealing with the passing of a fifteen year old sweet child with Spinal Muscular Atrophy that flew to heaven Jan. 13, 2015.
 I actually Hate SMA and all the lives it steals. I deal with it the best I can and keep praying that it doesnt take my Lizzy too soon like it has so many other innocent little ones. We never know when our time is up. God only knows that but.... still does not change how our hearts feel when these loved ones are taked from us so quickly.
Brianna McDanel lost her life fighting the disease that haunts my life every day. She was a strong minded child with a huge compassionate heart. This girl had very strong opinions and beliefs.  She loved helping other children with other diseases by sharing their stories. She would share posts on facebook when a child she knew was sick asking for prayers, or a death in their families and always was thinking about others while being in so much pain from her poor little body. She had been hospitalized several times the past few years and I just think her body was so warn out and could not go on anymore.
We have known her family since Lizzy was 18 mths old and her mom brought Christen and I bags of "stress food" to the hospital in Madsion,WI with a hospital stay for Lizzy. We had become friends and we had visited her family and have done family outings with them and other families. Lizzy bonded with Brianna's mom. Lizzy got her first power chair because, after Lizzy was denied for one we used Brianna's chair in a video Briannas father did for us to prove Lizzy could drive a power chair successfully. It worked.
Dealing with so many deaths to people that were so close to me is the hardest thing I have ever experienced in my life this past few years. One death after another. Mostly it was been family members but this little  lady was from my family too.... Our SMA Family.
Please say some prayers to Brianna's family to help them get through this time and to remember to celebrate her life as she was an inspiration to so many families. She will never be forgotten in our hearts.

Now, on to good thoughts here so I can quit blubbering like a fool thinking about the loss  Brianna's life  and how it will impact so many other lives with her absence here in the physical world.

Lizzy had a great Christmas. Only had one bad illness since fall. She is getting so mature at her thoughts it scares me. She is no longer a child but, a young lady with opinions and feelings. Love her to pieces.
Here are pics of her last week in the snow here. She had a blast. She insisted going out and it was 7 degrees!!
Please say prayers for MJ too !

"We believe in miracles because, we live with one! "

Thursday, November 27, 2014

Happy Thanksgiving - Living with Spinal Muscular Atrophy Type 1

We have so much to be thankful for!! Lizzy and her mom today
I will update soon! 

Monday, September 29, 2014

Lizzy turns 11!!! - Living with Spinal Muscular Atrophy Type 1

Today, Lizzy turned 11 years old!! !! A little bit over 10 1/2 years ago we were told she would not live to be 1 year old let alone 2 years old. I did not believe it and told our family we were going to do what it took to save this precious baby!! Well, I am here to tell you she has defied all odds., She never stops amazing me and her doctors with her strength. She does not let anything stand in her way!! She is a great kid and tells you like it is. She is my inspiration and holds a huge place in my heart.
She has been through an emotional roller coaster the last few years and came through it like a champ. Love you Elizabeth Leeann Huette hope you have a great Birthday!!