Miracle Ride Today (Spinal Muscular Atrophy)

Today we took Lizzy to the Miracle Ride 2009 at Timber Pointe Outdoor Center/ MDA Summer Camp in Hudson, IL. It was a great time for us and Lizzy too. Being a old biker myself(just have NOT been on one since Lizzy's diagnosis) and Paul still actively riding we fit right in. Brandon actually went to the event also which made Lizzy very happy. Big shocker he even attempted to go. He did get kind of freaky a few times take off and left. I just wish....*sigh* any way it was a great time. Lizzy loves all the bikers and is getting to know the MDA people really well. She hears bikes drive by and knows when its a harley.
Next year hopefully Lizzy will get to go to camp. Christen and I will be going with her. This year the MDA Camp here was closed because of the Swine Flu.

We are still trying to figure out our CA upcoming DR Wang appt. I believe we will some how get the funds needed for driving all that way. We are not going with the Goodson's as previously planned. They have made other plans as of today. We have went through trying to fly before and have been escorted off the plane because of a food pump issue that they would not approve at the last minute. We went through NOT getting our luggage when we were taken off the plane and I do not want to even try flying because not knowing where you luggage is at is very devastating. The new DOT guidelines are in effect and we are not putting ourselves through "Trying To fly" knowing we maybe be taking off the plane yet again. A few years ago Obama's office(When he was US Senator) helped us get this taken care of. Now, us knowing the new guidelines and trying to fly is something we do not want to even attempt. This situation is resolved between the airlines and the manufacturers of the respiratory machines. We are leaving the 15th of July some way some how driving Paul has decided tonight just incase any situtions arise along the way. Lizzy's appt is the 21st.

Check out this out !! We know this family . Pretty neat Vince!!
http://www.foxnews.com/video2/video08.html?maven_referralObject=6363746&maven_referralPlaylistId=&sRevUrl=http://www.foxnews.com/foxfriends/

Many prayers to our sick friends and for Jerika who will be getting spinal surgery next week!!

Oh and day 8 and no swine flu here !! Thank goodness!!!!

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

Upcoming Adventure (Spinal Muscular Atrophy)

Picture above is Lizzy's friend Charlie and Lizzy (He is as ornery and she is)

Its day 7 and no swine flu here. There were a few cases reported after the FSMA conference and many of us were very worried . A better way to describe it is "FREAKEN OUT!! Doc here ordered Tami Flu for Lizzy that I have on hold at the local Mom and Pop Pharmacy if Lizzy has any one the symptoms.

Lizzy went to down town today to the "Hang Loose -Wall dogs" doings with Paul and Christen. She loved it but did no stay long due to the HOT weather. I had Corbin here at home.

Well, with the NEW DOT Guidelines for flying looks like we are driving to CA this month that is its Total Estimated Time: 31 hours 20 minutes Total Estimated Distance: 2136.69 miles . I pray to God we can raise enough money to go. Lizzy has to get the med and we HAVE to do this. These new guidelines have made it hard for all people using c-paps, Bipaps and ventilators. The manufacturers have not a clue on how they are suppose to handle this. So, until they get this figured out we will not be flying anytime soon. It always some kind of brick wall we face since Lizzy's diagnosis but we are always able to figure things out. Praying a lot helps. The plan is meeting up with the Goodson's in Iowa City and driving with Jennifer and Jake all the way to Palo Alto.
Info on New Guidelines for flying:
http://www.mda.org/publications/Quest/extra/jun09/air_travel.html
http://www.mda.org/publications/Quest/extra/jun09/vacations.html

I never want Lizzy to know we have worried so much to get her what she needs. We do not discuss this around her. She thinks we are going on an adventure on the way to see DR.Wang. She is VERY excited. I would give her anything I have to help her get what she needs. She is my heart. She is a very special little girl. We are going to find a way to do this for her.

Many prayers for all the sick kids and adults out there. Many Prayers for Jerika who had back spinal surgery next week.

Add us to your prayer list to help us get to CA safely then home safe.

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

Back from Conference ( Spinal Muscular Atrophy)

Pictures above are of DR. Schroth, Lisa ,DR. Wang and Lizzy at the 2009 FSMA conference in Cincinnati . We left for the FSMA conference on Thursday morning. We left home and it was spring and come back to HOT SUMMER weather on Sunday here.

Lizzy was pretty hyper with so many people in one place. It was great to see our friends , Lizzy's and meet new friends. Lizzy did have some issues while there which were out of the norm for her baseline She plugged on Saturday and was very choky both Saturday and Sunday but she is fine since we are home. She scared the bjeepers out of everyone when she had to get out of her power chair and get a cough because she had just had a taste of pizza sauce and it made her quite choky. A couple coughs and she was fine. I think the motel was very dry and hot but it was a very nice motel. She did great traveling.

We went to DR.Schroth's workshops and me ...... could not keep my mouth shut as usual. I just think I can save them all and I have to get over that. I told one parent who complained about the bipap that if he did not use the bipap he could kill her if he did not put it on her. She is a type 1 and type 1s need the bipap to keep their lungs healthy and help them get stronger. Ooops.... my heart over rode my mouth again. Another parent who was ignoring their daughter who had a plug I kind of told them their child needed a treatment. Some parents just do not "GET IT" even after months after being trained to take care of their child and it makes me so mad I could scream! These kids were so precious and so fragile. They need pulse oxs on (when they are little and can not talk and always when they sleep) and cough machines and suction machines close ALWAYS in my opinion. Lizzy had a pulse on 24/7 until she was almost 4. When she travels and is sleeping she always has a pulse ox on and all her machines very close.

It sounds great about all this stem cells research will . The babies that are going to be in the trials for stem cells have not been born yet.

Got some news. We probably will not be able to fly to CA in July. UGH.... NEW DOT guidelines. We have to go to keep Lizzy on the med we have no choice. So, we have to come up with a fundraiser very quickly to get enough money to drive out there. I hope we can do it. WE will not take Lizzy off the med no matter what. So, keep us in your prayers that we can get this all figured out. Some how this will happen.

Many prayers for the sick kiddos and to us finding the $ to drive to CA for the July 21visit with DR. Wang.

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

Summer is just starting..... (Spinal Muscular Atrophy)

Sorry. Its been a few days since I have updated.

If you have not heard from me and you have emailed me I am really sorry. Something is wrong with my broadband so I have been using dial up so getting to staying online is hard. I get kicked off VERY easily. I hope I have the broad band fixed by tomorrow.

Its been extremely busy around here. Today for instance, I had my grand-kids , my niece and as always my Lizzy. ALL DAY LONG.... Never a dull moment. Babies cooing, Babies crying, Lizzy having a melt down because needs help with her computer, Rachael(Typical 13 year old) arguing with me about her attitude, changing diapers and losing of my sanity(it seems like some days). Oh and changing my shirt because one of the babies spit up on me. I don't get a chance to get much done these days as for myself, but that is okay. I love kids and taking care of them is natural for me. I would of had twelve if I could of. ( yeah right!!! )

We took Elizabeth and Caitlyn on Saturday to a indoor football game at the Coliseum in Bloomington. Extreme was playing. The MDA got us tickets and it was a great time. Elizabeth and Caitlyn thought it was the best time ever. It was last minute decision and with in 45 minutes we were packed and on our way to Bloomington. Paul got Caitlyn and Elizabeth Cotton candy and a huge slushy. Elizabeth just had tastes but the excitement on her face was something I will remember for a long time. Every one thought Elizabeth was so pretty and her power chair was too cool. Her and Caitlyn both felt very special. We also saw Amber (Director of the MDA in our area) and her two daughters. We talked to Amber for a bit. Not sure if Lizzy will be the area Good will Ambassador yet or if they will do a segment on her for the MDA.

The antisapation has started.... We go to the FSMA Conference on Thursday.
Elizabeth is so excited and we are too. Elizabeth says she wants to see her friends and show DR.Schroth how big she is now and how much she can do. She says she would like to see DR.Wang also.

Also more hurdles for us to jump with New Air Travel Rules for Respiratory Equipment are in the June MDA Quest online Learn more about this new regulation that is already in effect in the Quest Online article, and about other issues that are important to the MDA community at:
www.mda.org/advocacy Oh boy, can not wait to figure this one out since we fly out to CA in July for Lizzy DR.Wang's visit. I will start calling tomorrow to figure out what kind of things we have to do now. If we could afford to just drive we would. This is getting crazy just to fly with Elizabeth.


Lizzy has been doing great. She recovered quickly with the last illness. (All that good donor breast milk she gets makes her bounce back fast)

Many prayers to all the sick kids and for all the family and friends going to FSMA conference for a safe trip there and home.

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

Absolute and Friends Sound off for Muscular Dystophy(Spinal Muscular Atrophy)

BY: Sara Schnickel

Bugle News

Pontiac,IL

Absolute and friends sound off for muscular dystrophy
Contest entrants blast car stereos in hopes of high decibels

Absolute Sound and Security and the Absolute Perfection Car Club will host a car stereo contest on Saturday, June 13, to raise funds for the Muscular Dystrophy Association (MDA). Shown above, left to right, are Absolute Sound’s Tim Burgess, Tywone Kingsby and owner Calib Baxter. - Photo by Sara Schickel/The Bugle
by Sara Schickel

What do stereo speakers, Jerry Lewis and a car club have in common?

They are all part of the upcoming car stereo competition to support the Muscular Dystrophy Association (MDA) at the Jerry Lewis Telethon in September.

Absolute Sound and Security and the Absolute Perfection Car Club started the competition a few years ago in order to raise money for MDA — an organization dear to the heart of Calib Baxter.

Baxter, owner of Absolute Sound and Security, has a niece with muscular dystrophy. “Little Elizabeth, she’s almost six years old. She’s the happiest little kid. She’s not going to be able to walk. She can’t move her arms, but she’s happy — and that’s what gets me,” he said.

“The MDA does a lot for her. I mean a lot for her. I didn’t realize how much they get involved until Elizabeth and her problems,” said Baxter.

Tywone Kingsby is an employee of Absolute Sound who also has ties to the organization. He has a nine-year-old son with a medical condition.

“Calib and I were talking one day. I was telling him about my son. He told me about his niece, and we started talking about a fundraiser,” Kingsby explained, “We got a lot of friends and the car club involved.”

He continued, “It’s a good opportunity to give back to the kids. Having a child with it, I know how hard it is to buy all of the medicine and transport them to different places. Then we have [the MDA] who actually pitches in for you and helps you out. It makes your life a little more stress-free.”

The men wanted to do something to raise money for the organization that does so much to help children and their families. They decided to host a special contest that taps into the desire to blast car stereos.

Baxter said, “There’s a lot of high school kids in the area that have the loud stereos, but legally you can’t run your stereo loud because you’ll get a ticket.”

He continued, “So we try to do something one day a year where they can come in here. It’s permitted by law, by the town. They can come in here and crank it up, and it’s for a good cause.

According to the organizers, there tends to be a lot of drama and one-upmanship at this type of event. “It’s a soap opera. It’s a guy soap opera,” Baxter joked.

Since the event started, participation has increased from 21 people the first year to 38 in the second. The organizers are expecting about 100 cars to be entered into this year’s competition.

“We’ve had guys call us from Herscher, from Peoria, from Springfield,” Baxter said, “We hope it’s going to be a good one this year. We’re excited. I can’t wait.”

This year, the group contacted local businesses for sponsorships.

Even in these tough economic times, local businesses supported the fundraiser and donated not only prizes and money, but also food for the event.

“I am so impressed with the community. They have really come through. No begging, no nothing. [We just said] ‘Hey guys, this is what we’re doing.’ [They said] ‘You bet. Sign us up.’ Everybody we’ve called — no one has said no,” said Baxter.

Prizes include two 12-inch sub-woofers, a remote car starter, oil changes and tire rotations. “Snap-on tools got involved and gave us a jacket,” stated Baxter.

The goal for this year’s event is $3,000. The funds will be donated at the annual Jerry Lewis Telethon in September. The group will volunteer and answer the phones, then make their donation at the telethon.

“Everything that we make off the show goes to the Muscular Dystrophy Association,” stressed Baxter.

The car stereo competition at Absolute Sound and Security will start at 11:30 a.m. on Saturday, June 13. Entries will be judged in decibels. For more information, contact Baxter at (815) 822-2867.


For more info Elizabeth please read her web-site
www.our-sma-angels.com/elizabeth
"We believe in miracles because we live with one"

An adventure for Lizzy( Spinal Muscular Atrophy)

Lizzy is feeling better.
Her Papa and her took off tonight scared the bejeepers out of me . Lizzy(in her Purple power chair as she calls it) and him went out-side as usual in the evening. I looked outside and they were GONE. Granted he takes her on walks and they were no where in site. So, I called his cell phone because it was time for Lizzy to eat and I wanted to know Where in heck he had run off with her. Well, he answered his phone and I said "Where are you with Elizabeth." He said "On our way back" I said "ahhh back from where? He put Lizzy on the phone and she said "THE DUCK PARK NINA" They had taken off together walking and kept going. Its only about 5 blocks away. He had suction machine with him as usual and he said I had my phone and she was fine. They could of told me before they ventured off. She had been sick this past week.
She came in smiling from ear to ear. She said " I saw the ducks but they are not ducks Papa said they were geese, a dog ,a little boy, all kinds of people, cops waved at me and I had fun!! " I gave her a cough and suction then hooked up her feed. She was quite pleased with herself. Paul said "She asked 1000 questions and stopped looking at flowers and everything that interested her. " People stopped doing what they were doing just to talk to her. She talked to every-one he said . He said "I told you we were going on a walk" ( I did not hear him I guess because I was making supper I guess) So, she had her adventure today.

Yesterday, She pulled a good one. She had an eval from a Psychiatrist to determine her cognitive skills. Well, she did not cooperate at all with him. I did not go I had to watch Corbyn and Caitlyn. It might of been a good thing because this was a waiver program to help us get Lizzy some of the stuff she needs we are unable to get her like a lift for the van, Assistive tech things, extras for her power chair, help with expenses for doctor visits to CA and WI etc. She told me after she was home "I was not paying attention and the guy already knew the answers so I did not tell him anything but "I DON'T KNOW. She said "I did not like him and he just kept bothering me asking me dumb questions."
My gosh he probably thought we do not teach her anything at home. The stinker!!


Elizabeth is a amazing child and she never stops shocking me.

Many prayers for the Doebberts. Today was the day Andrea was to go into the hospital and be induced. Hope " Baby Shriek" is beautiful as the other two and healthy!!

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

Just Plain Drained ( Spinal Muscular Atrophy)

Its been a heck of a summer so far. Yee hah!!

Lizzy has been one busy kid. Outside every day almost with Papa and doing well. Then, yesterday she complained of a sore throat and secretions like crazy. Her throat was a bit red when I looked at it. Last night, low grade temp and I upped her treatments, put her on her Miracle mixture of Breast milk, Pedilite, Tolerex and her supplements. Today , she started Zpack just in case. She has been doing pretty well, but the whining..... OMG.....she whines so bad it sends sharp pains to the middle of my ear. God knows I love Elizabeth with all my heart but man can she whine so badly when she does not get her way or doesn't not feel good.

We have been watching Lexy my great niece(since Jan) and last two weeks Corbyn and Caitlyn have been here also. Then, just to add more fun to my life we have had the next door neighbor Blaze(7) a few times and today my 13 year old grand-daughter Rachael. Yeah , I am having a fun summer. NOT!! The grand kids are fine but having Lexy and Blaze in the equation is enough to drive this old biker babe back to bar hopping and shots of Jack. ooooops did I say that? I am 50 years old and man..... this life I am leading I will not make it to 51 with all the stress. I need to fix this life style soon!! I see a job coming in my future real soon.

I just heard from a dear friend of mine that helped me so much with Lizzy in the beginning. Her daughter (born 1 day after Lizzy) earned her wings 5 years ago this month. She tells me of a family she has tried to help with SMA in her area. She actually knows them. She thought the valuable information she told them would help save their baby. The mother told her the info she provided was too over whelming months ago. Well, the sad news is they just took this baby home after a lengthy hospital stay and it sounds like they are going to let her go. My friend blames herself. YOU CAN NOT BLAME YOUR-SELF for trying to help some one and they did not listen to you. They chose this for their child and there is nothing you can do. I have beat myself when people have not listened to me. I would cry and my heart would hurt so bad. A very wise woman told me : "Not every one is like you . It takes inner strength to care for a child as you do and sometimes people just do not have that inner strength. You did what you could and gave them the info they needed. Its their child and it their choice the path they chose. You can not save them all but only help as many that are willing to listen." The woman was DR. Mary Schroth who told me that. Those words changed my whole way of thinking. I only can help those who want to be helped.
My prayers are with this family.

Please keep Lizzy in your prayers as I do not know what is going on with this illness she has gotten. I hope we kicked it before it turned into anything.

Many Prayers to the Doebbert Family this week. Andrea is about ready to give birth and if she has not had the baby girl by the 9th they will be inducing. Wish I could be there. Love you Andrea !!

I need to get myself to bed. My body and mind seems to be totally drained these days.

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

SMA Treatment Acceleration Act of 2009

Got this from the MDA- Exciting NEWS!!!


We are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, S. 1158, the “SMA Treatment Acceleration Act of 2009”, has been introduced in the Senate by Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA). Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA) introduced companion legislation, H.R. 2149, in the House on April 28, 2009. On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Senators Stabenow and Isakson and Congressmen Kennedy and Cantor for their leadership.

This legislation builds upon the success of the SMA Treatment Acceleration Act introduced in the 110th Congress, which garnered 21 cosponsors in the Senate and 85 cosponsors in the House. The new version of the legislation has been modified slightly to ensure resources for SMA clinical efforts and infrastructure are maximized.

SMA is the number one genetic killer of children under the age of two. It is an inherited disease that destroys the nerves controlling muscle movement, which affects crawling, walking, head and neck control, swallowing, and breathing. Approximately one in 40 people, or approximately 7.5 million Americans, carries the gene mutation that causes SMA. Each child of two carriers of the mutant gene has a one in four chance of being affected by SMA.

Among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health (NIH) as one of the diseases closest to treatment based on scientists' advanced genetic understanding of the disease and a strong collaboration between families, federal agencies, and patient advocacy groups. Researchers have identified the gene responsible for SMA, as well as a disease modifying “back-up” gene that has opened the door to promising new treatment pathways. This research is providing groundbreaking data for SMA and other disorders, including the muscular dystrophies, Lou Gehrig’s disease, Friedriech’s Ataxia, Fragile X syndrome, and Huntington’s disease.

In order to build on the progress being made by investigators and bring treatments to children affected by SMA, a broad coalition of organizations, including Families of SMA, FightSMA, the Muscular Dystrophy Association (MDA) and the SMA Foundation, has united behind theSMA Treatment Acceleration Act of 2009, legislation aimed primarily at supporting a national clinical trials network for SMA.

Specifically, the “SMA Treatment Acceleration Act of 2009” provides for the following:

Federal support for a national clinical trials network for SMA;
Federal support to enhance the SMA patient registry and for expanded research on the epidemiology of SMA;
Establishes an Interagency SMA Research Coordinating Committee to include federal agencies including NIH, SMA researchers, and SMA families, to coordinate government activities relating to SMA, develop a comprehensive strategy for improving and expanding SMA research, make recommendations to strengthen collaborative research across multiple institutes at NIH, and identify barriers to the development of drugs for treating SMA; and
Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public.
Our organizations are issuing a “Nationwide Call to Action” for all SMA families, researchers, and friends, to help engage every Member of Congress in support of this bill and the great efforts of Senators Stabenow and Isakson and Congressmen Kennedy and Cantor.

Kenneth Hobby Martha Slay Annie Kennedy Cynthia Joyce
Families of SMA FightSMA MDA SMA Foundation

--------------------------------------------------------------------------------

NOTE: For more information on the “The SMA Treatment Acceleration Act” please contact any one of our Government Affairs staff:

Spencer Perlman Caroline Gibson Annie Kennedy Laura Lay
Families of SMA FightSMA MDA SMA Foundation
spencer@fsma.org carolinegibson@fightsma.com akennedy@mdausa.org llay@wswdc.com




www.our-sma-angels.com/elizabeth