Merry Christmas- Living with Spinal Muscular Atrophy Type 1

Merry Christmas !! Thank you to our wonderful friends that have helped us get through this holiday during our hard times. You are wonderful special people and you made this the best ever Christmas for Elizabeth.  There was a point Elizabeth was trembling she was so excited on her gifts. The kindness you have showed , the gifts of love you sent Elizabeth, the memories are embedded in our hearts. My husband was so touch this morning at all wonderful gifts Elizabeth had received he had tears flowing down his face as I did also.

You never know how much people care about you until they are there for you in your time of need.
Thank you for the gifts you gave Christen and me also. So, touching and heart warming
Thank you thank you Thank you!!!! 
This is one Christmas we will never forget!!
God Bless !
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

Lizzy's Story featured in Hope and Light foundation Newsletter-Spinal Muscular Atrophy

Happy Holidays from the Hope & Light Foundation
Thanks to so many generous donors and supporters we were able to offer more hope than ever to children with SMA and their families! A research grant enabled Dr. Ching Wang at Stanford University Medical Center to continue his work and drug trial for SMA Type I. In this issue you can read about a child who is benefitting from the drug trial. Please take a moment to read Lizzy's Story and learn how gifts like yours help make miracles happen! You can also read about the Hope and Light Foundation's Medical Conference which updated doctors, therapists and parents on the latest care and treatment options for SMA.



As we wrap up 2009, I would like to take this opportunity to thank you for your support, prayers, and gifts of healing and hope!



Best wishes,



Stephanie Miller

Co-founder and President







Conference Sheds Light on Advances for SMA

The Hope and Light Foundation took on the ambitious project of organizing a regional conference to disseminate information about the care of children affected by SMA. The Conference on Standard of Care and Therapeutic Advances for SMA took place on May 2, and was held in partnership with the Emory University School of Medicine, Department of Neurology. Read More.







Believe in Miracles: Lizzy's SMA Story



It was love at first sight when Jeanna Huette laid eyes on her granddaughter Elizabeth, born on Sept. 29, 2003. The baby, who would be known as Lizzy, was the first child born to her daughter Christen.



I remember when Lizzy was being tended to shortly after birth, she heard my voice and lifted her head to look over at me and our eyes met for the very first time. It was love at first sight; it was also the only time I was able to witness Lizzy holding her head up unassisted, she said.



To read more about Lizzy's amazing 6-year battle against SMA, please click here http://www.hopeandlight.org/lizzy1.html



Online Charity Auction for Hope & Light on eBay

The Hope and Light Foundation Online Charity Auction was a huge success! Thanks to everyone who supported the fundraiser. It's never too early to start helping with next year's auction. If you would like to volunteer for the 2010 event, please contact Stephanie Miller at 678-591-8331 or smiller@hopeandlight.org



Our Mission: Through faith, hope, and love, the Hope and Light Foundation endeavors to eliminate Spinal Muscular Atrophy, empower our community, and create a foundation stone upon which cures for all childhood genetic diseases can be built.









Connect With Us
Give a Gift of Hope      http://www.hopeandlight.org

As the year comes to a close, each and every gift helps. Gifts of all sizes make a difference! To make a year-end gift or become a monthly donor, visit our donation page.










Visit Hope & Light http://www.hopeandlight.org

Anticipation for the Man in the Red Suit - Spinal Muscular Atrophy Type 1

Sorry for the lack of updates. I have been busy with Elizabeth keeping her little mind stimulated. My PC was running very SLOW so I deleted lots spy ware!! Its running better now but still having a few issues. No viruses thank goodness.

Hope you are having a great holiday season .

Caitlyn was here today and made this snow man for Lizzy. It was too cold today for Lizzy to go out but she will get to go out here soon to use her sled. We will make sure of it. Watch for pics !!

Its will be a great one holiday for Elizabeth. The anticipation for that man in the red suit making her Christmas special is consuming Elizabeth's thoughts daily. I think 10 + times a day I hear " Nina is Christmas tomorrow? " There were a few elves that have made this Christmas quite special for her. She is so excited!!

Paul got his Christmas miracle a BIT early. He got the news on Monday for sure. He will be getting to go to Trade School Jan. 4. Application approved, All grants have been approved, student loan set up and he is so excited. I am glad he is able to do this. He is going into HVAC and Green technologies. Nine months he will be going to school 5 days a week. Its will be another hard year but..... the outcome will be great. He can even start his own business with in a year possibly they told him. I am just so excited for him!!  For us!!

My brother is home from Kuwait for the holidays, his wife and my niece Ariel. I will be baking his Christmas present. I am making Swedish T-rings tomorrow hopefully. I bake these T rings every year but I never make enough it seems. Paul and Christen have not been much help with Lizzy the last month or so. I have feeling quite over whelmed lately and the fact not having the money for Christmas shopping really upset me. But..... I am not going to let it consume me and ruin the holidays. I am just got to bake and cook for my family. Its a special time of year. I am a great cook  and I know it.


Lizzy has grown again and is doing good. Thank God for her health and strength.

God Bless you all and have a Great Holiday . Thank you my dear friends for for being in my life.

Many prayers For MJ. She is still very sick.


"We believe in Miracles because we live with one."

www.our-sma-angels.com/elizabeth

A Magical Night at Oz The Musical - Spinal Muscular Atrophy

This was a great night for Elizabeth .

Elizabeth above with Disney star Orlando Brown. He played the Lion. He was excited to meet her. I was impressed with how kind and how he showed so much love towards Elizabeth

We took Elizabeth to the Muscial Oz in Normal,IL on Friday evening. Caitlyn was in the muscial as a munchkin. You could not take pictures during the production so afterwards we got to take pics with all the upcoming stars. Some of the stars were from Disney and American Idol. It was quite an experience for Elizabeth. She was hit with a wave of magical awareness that at times had her breathless at what was going on before her eyes.

Lizzy is pictured here with (left to right) Brenda Castillo,Tierinii Jackson and Tatum Sheers. The Doo-Wop girls.  These girls were great. They thought Elizabeth was beautiful.  They also commented on Dawn and Caitlyn on how beautiful they were too.

Here is Elizabeth and (Left to right) Vince Olmo, Haydee Venessa, Michael Sylvester, and Emily Greenwell. They were the dancers. They also were great to Lizzy . They said they thought Caitlyn needed to be in TV commercial because she had a perfect face for it.

Elizabeth and  "Wicked Witch Brenda"  played by Yes, a guy!! Ryan Knowles. He did very good. Wow.... he gave an excellent performance. Very talented young man. They all were but this guy blew us away. Elizabeth says she did not like him but she would smile and could not take her eyes off of him when we were waiting to get pics. I am sure because he played a scary witch is the reason she did not like him.

Elizabeth and the Wizard of OZ Ryne Sanborn. He was quiet and one of the other actors told us we was in Highschool Muscial. He was sweet.

The scare crow played by Thayne Jasperson and Lizzy. He was so awesome to Lizzy and commented on her Christmas hair bow. He also told Lizzy how beautiful she was. He had a bubbling personality.

Elizabeth and Tin Man played by Nathaniel Flatt. He loved Corbyn.

Elizabeth and "Glinda the Good witch" played by Vonzell Solomon( American Idol 4th season 3rd place ). She was really good actress. She talked to Lizzy also a bit.

Elizabeth and Dorothy played my Aundrea Fimbres . She is a very good actress also. 

The director, writer,choreographer for OZ Todrick Hall. Oh my gosh he was so great to Elizabeth. He asked her how she like the play and all sorts of questions.  He was very good with her. He very much impressed me on how he treated her.

This was quite an experience for Elizabeth. We all thought it was great.

Elizabeth woke up me up with her pulse ox screeching from heart rate reaching 160-190 about 4am. I jumped up thinking it was a fever or she was sick. I woke her up and asked her what was going on. She was dreaming!! Oh my that was scary. Never has that happened before. She was fine after I woke her up.

My kids went together and bought us tickets for this event for our anniversary . I am so happy we we able to go.

Many prayers for all the sick kids and those recovering from surgeries.

Many prayers also for our good friend MJ who just went through a huge surgery.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

A day away - Living with Spinal Muscular Atrophy Type 1

Today was a better day . Christen, Elizabeth and I took off for the day. Van packed we headed for the mall and a craft store to begin with. We left around 1pm.
If anyone wants to know where the best deals for Christmas dresses with the best quality is SEARS. I am telling  you I have looked online and no place can beat their prices. I wanted to go look at some of the dresses I have been looking at online.  I have looked all over  online I think the best deals are at Sears. They are 55% off. We were just looking today. Walking around the store I was stunned at the great deals on all their clothes. Great Quality too. So, that is a FYI.
We also went to Michaels also. They had Christmas wooden ornaments 50% off . They are .50-.99 a package. We did get Lizzy some to paint since they were cheap, keeps her busy and not bored. We have to do projects all the time. I know we are on a budget but I did not spend that much and it made her very happy. 
Then, we went to my daughter Dana's house picked up Robby and took him with us. We had to go get Rachael from a choir event in their town. There was Santa and MRS. Clause at the hall where we had to get Rachael. Christen was eyeing the crowd and there was hardly anyone in line. Christen decided Elizabeth would see Santa now. She ran back out to the van and said "Lets get her in there quick " Alrighty, then Elizabeth got to see Santa and Mrs. Clause and it was FREE.  FREE can Not beat that price and they did a picture and sending it to us. Paul paid like $25.00 for pictures for Lizzy at the mall last year and the year before. I wish I would of had my camera but I didn't.  Elizabeth asked Santa for" An American girl doll and socks then she went blank." I guess she did not have time to rehearse her list.   Socks? I know she told us cool socks but she has lots of socks not sure why she insists on socks this year. Her list at home is pretty long. Ranging from dolls to chocolate candy. She got upset on the way home saying "I forgot to tell him this and that....." I said" he knows what  you want Lizzy so no worries sweetie".
So, getting away helped a lot today. It was a good day after we left.

I laid awake all last night just crying over and over thinking about my life. I am not feeling sorry for myself when I am crying for the memories I miss. I miss a lot of our past.  I miss all our girls at home. I miss what Paul and I have lost in our relationship. Just think 35 years of good times as well as the bad.
A good friend reminded me I am the strength that keeps things together in our family. I guess I do.

Christen caught Paul yesterday with swollen eyes several times I guess and when she told the thought just tore me up to know he was at that point. To know he hurts just like I do and shares our worry was  hard for me to realize. He just doesn't not say a lot. That is why he has been tinkering around in his shop for months. He has always been so strong.
He was my support when everyone else was telling me there was nothing that we could do save Elizabeth. He told me I would find a way. He said "We have to save her" He helped me so much with her in the beginning and still at times helps a lot with her as far as keeping her busy. So, needless he has been my rock.  He has just seemed so fragile for awhile now. He is still the love of my life.

Thank you to all that replied to my last update.  I was not even going to post about it and then I did.  My fingers took over. LOL
Thank you for your kind words and for caring!!! 

Many prayers to all the sick kids!!!!!

Keep us in your prayers we need them to keep us strong.

"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

Thirty-five years of marriage - Living with SMA

This is a us at our 25th Anniversary party. 
Today is my husband and mine 35th  wedding anniversary. Thirty five years is a long time with one man. We have been through so much together and not so long ago things were looking pretty good for our future at the time of this picture and up until 2003. Then, there was a turning point. I quit my jobs because of an injury to my back . I had worked two jobs. Lizzy was born two weeks before my injury. Then, I did not go back to work because I needed to take care of Lizzy and fight for her.  I will never ever regret my decison. 
Then, Paul was losing his job last year and was laid off most of the month of December and the plant closed down and was sold and he was laid off for good March 5, 2009. He was not hired back because of his union involvement even though his work record was exceptional. The place is getting ready to close here soon we hear again. A Spanish company bought it and they treat employees badly , cut the pay, busted the union etc. We have enough headaches now so maybe it was  good thing he did not get hired back. I just wish he could of found a job soon after his layoff.

Thirty five years ago we had no kids..... we did everything together. Paul was the love of my life. He still is but we get along now like my grandparents did.
I was sixteen years old and married. I remember imagining our lives when we were in our fifties. We are there.  We swore we would be together forever. He rescued me. It does not seem that long ago. Where did all the time go?  Now , he hides out in his shop and I take care of Lizzy and the  house-hold . His health is not so good  these days. I worry about him so much too. Where do we go from here?

Tonight,  I made ribs and my own homemade BBQ sauce for dinner. We can not afford to go out and eat. I am sitting on the home pc and he is on his playing one of Elizabeth's  games right now
 Did I think it would end up this way? Never in a 100 years. If someone told me my life would be like this I would not of believed it.
 I used to be  very arrogant not that long ago . I was very good at everything  I did and that helped me in my jobs.  I did not like that person I was.. but I was secure.  Now, Fat and broke..... Those words hit my heart like a ton of bricks.  I was a "go getter" from the time I young. I also did "beyond the dot thing" "Over achiever at work"  I was called all of the above from my employers.  Now, I worry about if we will have the money to pay the house payment or the electric bills. Does not seem fair does it? I guess they say we make our own destiny. I do not know how I made mine but I  guess I did. I have been crying all day and can not hardly think straight. I did not wake up all upset today. I was in a good mood. I was up early  I asked Paul a question  this morning and he tells me "He is 20 bucks short on the house payment" .  I lost it right there and then. He did not expect this out of me. I figured things out like I always do and we are okay but I did not know things were really this bad. I knew it has been rough but not this bad.  He used to stash money(saved for emergencies) all the time and the" Stash is GONE" and has been for awhile. Taking a deep breath  I know we will get through this.  I know we will.We always do. I know this because I have faith. Faith has gotten me through so much these last 6 years. We believe in miracles because.......
I got to get it together to make it all work.  I have to be there for Elizabeth to make sure she gets what she needs. I have to be there for my family.

Paul is going to trade school here soon and things will be good hopefully in few short months. Lizzy is doing great. We have our home. We have family. I have better friends than I have ever had. That is all that counts.
So, I guess I took the day off to feel sorry for myself and I had no reason to. Wow, what a day wasted.
Thanks for listening.

"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

First Snow - Living with Spinal Muscular Atrophy

Its snowing and Elizabeth is just so tickled. She wants to go out side and sled and it just started snowing!! See the blur above that was Pepper pulling Lizzy last year and she wants to do it again!! I have gotten a new camera since this!! My brother and his kind heart got me a new one for Christmas last year.

Lizzy is totally over her last illness and while it did cause her to become much tighter in her joints but with the help of Linda her Myofascial Release Therapist and me working on her she is not so tight. Her back today is straighter also. Thank Goodness. I was worried. She has been pivoting to the one side really bad since her illness while in her power chair. I did stretching every day while she was sick as usual but this time I really noticed how tight she had gotten every where. I need to also get a hold of Tony at Plattners because her TLSO has not fit her right since she has gotten it and she NEEDS new AFOs.

Elizabeth started on some breast milk from a new donor and doing awesome on it. Its very exciting for Lizzy to get newborn donor breast milk.  The new born breast milk contains in the first few days contains colostrum and builds immunities. This stuff is great for Lizzy  Christen met the mom on WED that is donating to Elizabeth.  Another awesome lady!! A former breast milk donor of Elizabeth's set this up for her. We are so excited to have this milk for the winter. She is going to pump for Lizzy as long as she can. We call it "Elizabeth's Miracle blend." made with love.

Elizabeth and I have talked about all sorts of stuff this week. She is so funny and her comment when she doesnt like something or something is not going her way is " nice".   Its too funny.

She is getting all excited about Christmas.

Many prayers for MJ , Jake and Stella as they are not feeling well.
Keep Lizzy in your prayers also!!
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

"Sense of Deep Love and Caring" Living with Spinal Muscular Atrophy

The "crisp" cold air hit here last night and the "Smell of Snow" stirred my senses.  No snow as of yet here but in the area they did have a few flurries yesterday in surrounding areas. 
The Christmas season warm bubbling inner peace has consumed me. Feels, so great to have that "sense of  deep love and caring" for all your friends and family . These feelings are  so very strong this time of year.  Its the season of miracles. I love this time of year. The warm glowing warmth inside your soul.

Lizzy's ramp is decorated with white lights , garland and red bows waiting patiently for Santa's big entrance. She is so proud it was her idea to do this year.   It will be a wonderful Christmas for Elizabeth.
Comparing last year to this year and seeing how she is cares for so many people, how she remembers so many people and things about them at six is just amazing. She is so wise for her young age.

We have met so many families this year that many have actually looked at Elizabeth as " Hope". For so many babies to be diagnosed and to find "Hope" in that tunnel of fear and heartache is something they need to find to be able to lead a life like we do. Its not a bad life. It is a "Safe Life". We do what we need to do for our own. We also have our inspirations( besides Elizabeth) that keep us fighting for her. We have met so many wonderful people. I have said it before " Never have I ever had friends like I do now". I feel like we are family . We are all a part of each others world.
We have special friends also that are making sure this is a Christmas that Elizabeth remembers. They have touched my heart in ways that leave me breathless to the act of kindness and caring they have shown for her. Thank you from the bottom of my heart. I can not thank you enough.

Elizabeth did not get picked as the IL MDA Goodwill Ambassador but that is okay.  (sigh of relief) We have a VERY busy life( In the Spring& Summer)  any way and even for Elizabeth to be nominated is an honor.
I have never met the new local MDA Goodwill Ambassador or the IL one. They picked boys for this next year.  Its great to actually have a MDA news letter now that gives you that info about the kids and their families. We found out today when we recieved the news letter. We will still help out when needed when we can.


Many prayers for MJ and our friend Jake G and they both are sick.
We have many of you in our prayers. Thank you for those of you in our life.

"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth