Please read about DR. Mary Schroth. Lizzy's doctor from Madison,WI.

http://www.madison.com/tct/news/CTstaging/303127
She helped save Lizzy's life and helps save children all over the world.

Spinal Muscular Atrophy Type 1 (SMA1) is a genetic disorder that occurs in 1 in 4 children born to parents who both carry a recessive gene for it. (1 person in 40 carries such a gene.)Children born with the disorder gradually lose strength in their nervous systems and die, usually by the age of two.There is no known cure or long-term treatment. However, the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA, out of more than 600 neurological disorders, as the disease closest to being understood and a treatment or cure developed.Gwendolyn Strong is a ten-month-old girl who was diagnosed with SMA1 in April. Her parents have started a petition to take to Congress to support the SMA Treatment Acceleration Act, a bipartisan proposal to increase funding for this disease. We hope to get 50,000 signatures. I hope they get a lot more.Please consider taking a few seconds to sign the petition:http://www.petitiontocuresma.com/
We need to save these babies and these kids!!!

Lizzy is raising money for the MDA for the Stride and Ride . With out research we do not know where we would be today. Lizzy was in a clincal study at Stanford that the MDA help fund.
Please help donate to the MDA. Research is so important for the future of these kids . Help save Babies!! Help save kids!! please donate!! https://www.mdaevent.org/ParticipantInfo.aspx?j=39713595-7cdd-486f-b431-7422913418c0

I am getting ready to get Lizzy her treatments and I have been thinking about some things. I need to vent some more. You know there our very bitter people in this SMA World and it upsets me because their children feel how bitter they are. I am not talking about the parents that have lost children due to this terrible disease. To lose a child to such a disease would totally tear a person's heart in half. I am talking about the parents of these kids that are living . It saddens me that a child must feel bad about themselves because every day a parent comments on how mad they are their child has this terrible disease. We hate SMA but we live life to the fullest for Lizzy. We so want to give Lizzy the best quality of living we can. No one is responsible for this disease and so people need to quit blaming their selves , their spouses and get on with life and do the best job you can do caring for these kids. Yes, I hope the government passes this bill to help find way to treat and cure this disease !! So many babies and children have passed away. Every time child passes from this disease another piece of my heart hurts. But ....I am not so absorbed in hating this disease that it takes my passion and my direction away to help Lizzy . I do the best I can for her. She is my focus and all the kids helping the ones that are living, live the best quality of life they can. I have been judged lately because people say I have "accepted "our life. I have not accepted it I just do not dwell on it. I deal with it. I do what I can do for these kids. I get VERY upset when parents DO "Nothing "to help these babies /kids when they now there is interventions out there to help.

I just do what ever I can do for Elizabeth. To keep her smiling and happy. You know its the" now" they are living . My life is not going to sit still and wait for a cure. Help these kids now with interventions so if a cure or treatment does come we will be ready. What I am trying to say. Is I do what I can do and make life as happy as possible for Lizzy safely.She is my life, my heart, my hero and my light. Please think before you speak negative in front of these kids. They are smarter than you think.Thank you all that helped me with Lizzy!! I am so proud of Lizzy and all she can do. Those eyes that smile makes my life worth living. I am NOT afraid to say it either. I will say it again. I AM PROUD OF ELIZABETH AND EVERYTHING SHE CAN DO!!!! God Bless

Lizzy is Amazing

I can honestly say Elizabeth is finally over being sick. Wow!! She amazes me. She wants to go outside and swing in her swing and drive her "Purple power chair" . I am back to her regular treatment schedule.
So it looks like our trip to Kentucky is still on. I really think it was the weather that contributed to this illness with Lizzy. I also had a sinus headache for days!!!!Lizzy had been doing great until the day went to the Executive lock up for the MDA the Wed before the telethon. She plugged on the way home. We had to stop and I work on her for a while to get it out. Every time she does this I think I age 10 more years. At least she tells you what she needs. There are many kids that can not talk with this disease. Since then she had plugged almost every day. It was so hot here the high 80s and 90s .

Paul(aka Papa) was bumped to second shift due to massive lay-off at the job he has been at for 30 years. He is not sleeping well and he is terribly depressed. He was bumped to welding from maintenance mechanic. Poor Papa. Hope this lay off does not last long.
Our trip with Lizzy ought to help.

Well time to take Lizzy out-side. Its Beautiful here today.
Many prayers for our sick friends.

Please go to this site and sign the petition to help pass this bill. Help save these kids!!!
http://www.petitiontocuresma.com/

Fall at a glance

Lizzy is doing so much better. She is getting junk out that I did even know she had in her. She has been doing pretty well last few days. No fever. Eyes are cleared up and her spunk is back. Her attitude is back 4 3/4 years old going on 16. She will be 5 the end of this month. I can not believe it!!
Lizzy decided that "Kid Rock was hot "when she saw him on the TV at the motel we stayed in last Sunday for our area MDA Telethon. Where that one come from I have no clue.
Fall is sneeking up on us *sigh*. Its been a great summer. Lizzy has done so much this summer.
We have a trip to meet a some families in Kentucky this next week so I pray she is totally recovered by this next week. No road trip if she is at all sick.
We are also gearing up for our Stanford trip next month. October is almost here UGH..... that means winter is close behind. brrrrr
It was cooler last night and a peek at fall was upon us. We have to get our bubble ready for winter soon.
We are still trying to figure out what to do about school. She will not be in kindergarten till next school year so she will be with the same kids as last year. I am going to try to homeschool her but I need to get materials for her. She is a sponge when it comes to learning. I have taught her a lot already with out even trying hard. She did enjoy school the past to 2 years but the parents of some of these kids do not get why they should keep their sick kids home even after the letter we sent home. explaining why you should keep your child home when they are sick. That illness she got last year scared me so badly she caught at school. She was so sick.

Well time for my girl's treatment and then to bed.

Prayers for : MJ, Sophia S, Courtney,Madison B, Ethan B family, Emily, Ally,Hayron , all the sick kids and families that have lost loved ones.
I found this great web-site for mom's with kids with special needs. You need to check it out. http://www.mothersfromhell2.org/index.html its got some great resources on it for ALL states not just IL.
Thank you who all watch this blog. It means a lot to me.

Sad end to summer

The MDA telethon in Peoria ,IL was Sunday and Monday. Lizzy did great but it was a different atmosphere this year with all new people from the MDA. They did raised a lot of money in our area.

We just love the WMBD news people. Lizzy loves Bob. He had his 2 week old grandson on the air with him.

Our" Smiling Fighter Princess" is now VERY SICK. Lizzy has a sinus infection. A Bad one. We took Lizzy to see DR. Hough about 3pm yesterday. I dont know how she is going to tolerate more bipap with a sinus infection. So far no extra bipap time will she tolerate except for her normal over night times.
We are hanging out watching movies and reading her Fancy Nancy books over and over . She is miserable. She started Zithermax yesterday. She has a slight fever and both eye is swollen and VERY RED. Blood in her nose and feels like crude. Laying low. She said she had a headache Sunday she said on the way home. Her O2 is pretty good not dipping past 97 but her heart rate is a little higher than normal

I have increased treatments to every 3 hours and have her on her miracle formula breast milk , tolerex and water.

We have a trip next week to Kentucky and I pray she will be better so we ca go. She is looking forward to seeing MJ and see a few of her friends.
Keep Lizzy in your prayers!!