Feeling old and proud ( Spinal Muscular Atrophy)

This week-end has been quiet. Not much going on here except later today my oldest grand-son's 18th birthday party is around 6pm . I was 33 years old when he was born and it seems like yesterday he was born. To see him now it feels like a dream. Where has the time gone? I seem I turned around and he was a young man. He lived with us for the first 4 years of his life. He was the boy I never had. Christen and Jess say he is like a brother to them and was raised with them. His "sperm donor" (Biological Father) never had much to do with him and its sad. He is a great kid and turned out pretty well. We always made sure he had what he needed growing up. I am very proud of him. He is going into Criminal Justice when he finishes school this year. Go figure. That was my major in college. He has not got into any trouble except speeding tickets. The song by Alice Cooper come to mind " Eight-teen" . I remember singing that when I was 15 and 16 wishing I was 18. I think I wanted to get old too fast and never let myself be a kid. I was married at 16. Shocking isn't it? I also got my GED and went to college when my kids were young. I did it though. It was something I needed to do for myself.

I had Robbie(12) and Rachael (13) here yesterday. Talk about attitudes.... Did I act like that when I was that age? Well... Mom says I was worse. I have always had an opinion and if that is a attitude then yep I guess I did.
Lizzy watched the New Hannah Montana movie 5 times yesterday. She looooooooved it. I have to admit it was pretty good. Then today she has been watching High school Musical 1&2. She loves those movies also.

Its been a very good summer in general. Lizzy has been healthy , is getting older and she also has opinions. Its been strange having my husband around. He has aged so much this year. I guess its all the worrying about losing his job and not being able to get one. I looked at him really heard recently and I could not believe how old he is looking. I am sure I am also. We both seem to have many aches, pains and no patience. Its been great to have him home helping with Lizzy. But.... it would be nice to be able to watch TV again. He is attached to the remote.

I am getting ready to start Lizzy on home schooling next week. She wants to learn so much. It will be great to be able to do this at home. She is fun to teach.
Now getting all her other things she needs like PT/OT Swim therapy I will be working on this week. Some way some how I will get this done.
A bit over 5 years ago I was worried about how to keep Lizzy alive and now Its I worrying about getting her home school etc. How life changes. I dont know how I got here but I thank God I am here instead of then. I thank God for all my friends I have met on this journey.

Happy birthday Charlie!!! We love you!!

Prayers to all those that need them!!

"We Believe in miracles because we live with one."

www.our-sma-angels.com/elizabeth

We had a great busy summer (Spinal Muscular Atrophy)

Finally... we are done with our trips. Awwwwww.... we made it all summer with out too many complications. We have been from IL to Ohio and back. From IL to California and back, We have been from IL to close to Minnesota and back and two trips in less than a week to Madison. All safe trips and home safely. Only issues were my fall( I survived), Christen, Lizzy and I with allergies. I can actually say I am on a diet as of TODAY!! So, much great food over the summer we enjoyed traveling. We have been with so many great people also. I am glad I am finally home getting back in the swing of things again . A summer to remember. Lizzy had a blast.

Do you ever meet a family you just have to help? Its just an over whelming feeling that there is something you must do to help these people. I feel like I need to help as many families as I can all the time but this was quite an unusual feeling. We met a family at the Madison conf over the week-end that I had to offer to help them with a few things. It was like a something I had to do. With enough said we did help them and I feel we will be in contact with them more over time.

We got back yesterday from Madison. Lizzy had her yearly Muscle clinic visit. Her curve has not changed in 6 months!! No surgery yet(and the crowd roars). DR.Schroth said Lizzy is doing awesome. DR.Schroth is changing NOTHING except upping one med a bit because of weight gain.. Lizzy is doing great.
Gaining weight, healthy , Growing, no Respiratory issues. Life feels pretty good right now with Lizzy.

We are supposed to go to the MDA telethon in Peoria labor day week-end but this year we have to pay for our own motel rooms and at this time with Paul not working yet and we are barely getting by and all the travel this summer may go for a few hours on Monday. If we would of known before today we could of saved a bit of money for this event.
We are not quite understanding why there is no MDA fill the boot here this year. It seems since the reorganization/ merging areas together of The MDA sometimes its been hard to get out there to all the areas.

Lizzy needs new AFOs since she has grown so much recently.
We need to figure out a way to get her swim therapy(even it is paying out of my pocket), OT and PT. Any body have any ideas? Easter Seals will not return our calls in Bloomington, IL . We started calls AGAIN today to Easter Seals leaving messages. Lets see if they respond This time. Lizzy needs this badly. Our local hospital has no Peds OT and PT is here part-time and she is the one that dropped Lizzy because she said there is nothing else she can do for Lizzy. Lizzy will not have anything to do with her because Lizzy says she "Hurt her Heart."

Its almost Fall. Its been a great summer and basically illness free. One sinus infection for Lizzy in June and I think that is about it.

Any one know of any maintenance Mechanic Jobs please tell them about my husband with over 15 years experience!! WE will sell our house and move but not too far from DR.Schroth in Madison. IL Chicago and central IL is good place for us to move but we do not want to be to far from DR.Schroth as I said. Any where with in 100 or so miles of Madison,WI. He had a great work record and has a UAW journeyman card also. No one seems to want to hire him because of his age. That just sucks!!
We need insurance for him and I!! His meds are breaking us!! He needs a job badly!!

We met a newly diagnosed baby in Madison named Nora. She is 5 months and from Tennessee, She is so cute!! pictured above with her Mom.

Many prayers to all that need them .
We believe in miracles because we live with one!!

www.our-sma-angels.com/elizabeth

On the Go Again (Spinal Muscular Atrophy)

We just got back home from Madison,WI. It was a good trip. I did not learn a whole lot as I already know a lot of what was talked about It was great meeting other families and seeing some of the ones we have met before but not seen in a long while.
I loved finally meeting Barb (Drew's grandmother). I just wish we could of spent more time together. We met Drew's Mom and Nanny too.

I was interested in the PT/OT a lot. We need to get Elizabeth back in to swim therapy but.... how? Our PT dropped Lizzy and we have no other place with a private pool we can use. Very Frustrating to live my life sometimes. We have to figure out another option as we have exhausted all we had. I can talk more to them on our visit to Madison this week maybe they can help us figure this out.

We are getting ready for another trip to Madison for Lizzy's Muscle clinic visit. We will be there all day on WED. I am worried about Lizzy shoulder blade but I think once I get her back into swim therapy it will do better as before.

My ears still feel like I am UNDER water. Darn allergies any way.

I have lots to do before tomorrow but thought I would quickly update.

I had a letter from Ben(Lizzy's first crush - counselor from CCK) and Lizzy was is inspiration to decide to become a doctor. He is working with DR.Brenda Wong in Ohio. Reading his letter made me cry. It touched my heart so much. I am glad he sees what I see in Lizzy. Her determination to do what ever it takes to fight this disease and to be happy. She is always smiling. I forgot tell him Lizzy wants to be a doctor too. I am sure she will.

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

For my friend Vince I am posting this for him from face-book




Ride for Sophia's Cure
Knock Out SMA
Host: www.nomorefootprints.com
Type: Causes - Fundraiser
Network: Global
Start Time: Tuesday, September 15, 2009 at 2:50am
End Time: Thursday, November 12, 2009 at 5:50am
Location: Wantagh, NY - Irvine, CA
Phone: 5162140348
Email: sophiascure@aol.com

DescriptionThree men from Long Island, NY are going to ride bicycles from Wantagh, NY to Irvine, CA to raise funds and awareness for SMA, the leading genetic killer of children under age 2. They were inspired by the story of Sophia Gaynor from Wantagh, NY who has the most severe form for SMA and her parents quest to find a cure for this dreadful disease. They are going to ride their bikes for over 3500 miles to try to put an end to SMA.

We are not asking people to physically attend this bike ride, but to show support for Ryan, Mike & Dennis's efforts and make a donation. Your donation is tax deductible.

They will be travelling in the following cities:
Wantagh, NY
Philadeplphia, PA
Baltimore, MD
Washington D.C.
Winchester, VA
Athens, OH
Cincinnati, OH
Seymour, IN
Washington, IN
Salem, MO
St. Louis, MO
Jefferson City, MO
Sedalia, MO
Overland Park, KS
Newton, KS
Dodge City, KS
Lamar, CO
Pueblo, CO
Salida, CO
Gunnison, CO
Delta, CO
Grand Junction, CO
Green River, UT
Nephi, UT
Delta, UT
Ely, NV
Tonopah, NV
Henderson Park, NV
Death Valley National Park, CA
Dunmovin, CA
Johannesburg, CA
San Bernardino, CA
Irvine, CA

To make a donation to this ride please visit: http://www.fsma.org/index.cfm?ID=4535&TYPE=1392

For additional information on how to make a donation please contact Vincent & Catherine at sophiascure@aol.com.

If you are interested in volunteering to assist the bike riders in any way, please contact Debbie at greaterny@fsma.org.

Miracles do happen...let's make one.

Faith Lodge ( Spinal Muscular Atrophy Type 1 )

This is SMA awareness Month.

What better place to find hope than Faith Lodge http://www.faithslodge.org/

We ourselves did not think we would be able to go to Faith Lodge this year but pulling resources together for this special week-end was something we just had to do. It has been really crazy around here this summer with all the things we have had to do. There were a few families unable to come back this year. The Kuesters and the Doebberts. We did miss them. This special time was something we just had to do. For ourselves as well as the kids. So, we found a way to go this year. We took off last WED with everything ready to go and off we went on our 8 hour trip(according to map quest) to Faith Lodge. Let me tell you though..... its more like 10-12 hours because of the Dell's traffic. We were doing pretty good time and these two semis had us pinned in between them for about 10 miles. With encouragement from her father (since he had to pee like a "rushing race horse") to get out of that situation. Christen finally got a chance to pass and had to speed up to get around these truckers who were messing with her. . Well, hid behind some bushes on the highway was Wisconsin's finest trying to catch a out of state speed violator.... Well, he did.... Christen. First, ticket she has gotten since she was 16 years old. He got her good. The ticket is over $200.00!! No mercy in Wisconsin so BEWARE!! So, we got behind but arrived at Faith Lodge before dark. We were welcomed by Katie Poole and Tammy McDanel.

Faith Lodge is a place where you can just relax. The feeling you get when you walk in the lodge is inner peace. No other way to describe it. Peace... Our minds and bodies seem to never get enough rest we are always going. It was so great having no agenda. We all in our every day lives have schedules and on this stay we had none. Sleep as late as you want, Stay up as late do what ever you want. Take a walk, Cry together, do a puzzle, do crafts, make Tye dyed T-shirts, make necklaces etc. Paint a bird house. Its just amazing how the place makes you feel a part of it.

We all got together every evening for dinner. Just talking to other families and sharing our lives is so great. We got to take our time and do what ever. The kids all loved being together. We could suction at the dinner table and it was OK!!

Unfortunately, Avery Poole was not feeling so well. Cory (Her Dad) took her home on Saturday. She was probably over tired and ate too much . She was fine the next day I hear. We missed Cory and Avery both very much.

Mary Kate is such a neat kid. We just love her. She kept asking Lizzy if she could laugh and Lizzy would roar laughing. Like ,Lizzy you NEVER know what Mary Kate will say next. Mary Kate is going to get a IPV soon so was asking Lizzy her opinion on the IPV. Mary Kate watch Lizzy do the IPV and ask Lizzy if she likes it and Lizzy said "Yes, it helps her so much." Hmmm interesting huh from a little stinker like Lizzy that fights me ever once in awhile because she says she doesnt need it.

We met Katie Poole parents Just great people. We loved them. Katie's Mom Sandy cooked a two HUGE dinners. Lasagna one night and the next a Huge cook-out with everything you could imagine that tasted so great.

Aubrey Poole was the youngest child there.She is too cute and little. She is 2 years old. Lizzy was using a toothette and cleaning her mouth out!!

The Doebberts were unable to make it this year but Andrea's Mom (Judy) and her Dad (Bill) popped in. It was great to see them. They feel like family to my family and we just love them also.
We had two campfires and Lizzy discovered smores. She was say " Uhhhh theeeeeeeese are just soooooooo good" and kept moaning the whole time she was licking them. "Oh my gosh she said I NEED more!"

It was great to see everyone. It seems most of the kids seem stronger and healthier this year.

The Kays drove from Kentucky again this year. Julia looked great. Rachael just loves Holly and Maria besides she said Julia is just like Lizzy. All the kids seem to be "sassy" !!

It was good to see Tammy, Todd and Brianna McDanel from IL also. They had Madizon Tammy's 13 year old niece with them.

Lizzy loves Jerika. Jerika and Jen came with a friend they met when Jerika got her dog. Peg from Boston. She has Spinal Bifida.

I could go on and on but seeing some of our friends again and spending quality time with them was great. Seeing the kids interact was priceless.

"Its a place where HOPE grows. "

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

There is no place like home (Spinal Muscular Atrophy )

Pictures above: Molly and Lizzy
Hayden and Lizzy

We got home Sunday late evening July 26th. We left home July 16th. It took 4 days and 3 nights to drive to California and 4 days 3 nights to get home.

You always like to think about how great a road trip would be until you are on it. I kept thinking what an adventure it would be for Lizzy. It was for her. It was long and hot all the way there.
On the bike it was great not so many years when Paul and I would just take off and go.
Never in my 51 (yep turned 51 last week) years of life did I ever imagine driving 2130+ miles one way with a child and myself sitting in the back seat of a van. We were carrying 200 ounces breast milk there and trying to keep it frozen, a power chair, food to eat on the road 7 days worth of clothes and all the machines,supplies and everything we needed to keep Lizzy healthy. If this trip was not "a have to" thing we would of never went but Lizzy had to go and you do what you have to do for your kids. After we hit IL on the way home I got this overwhelming feeling how glad it was to finally be almost home. Then when we pulled in the drive I wanted to do nothing but go get in my own bed. "There is NO place like home"

DR. Wang told us in his outcome on his trial results that kids on the Hydroxuerya have a 250% chance of surviving over the age 2 than kids with out the med. Wow, the results gave me goose bumps. He has to do one more study for FDA approval since his test study patients were so few. He needs about 3 million dollars to do this. I would love to see this med get FDA approval. So, many the kids that could benefit from this med. NIV protocol and diet and so very much important also.

DR.Wang spent a lot of time with Lizzy and was so excited to see her. I have never seen him like this with her. He was so happy to see her and just kept raving how great she was doing. She has gained 7 pounds since last October. He kept saying how great she looked and how great her complexion was. He asked her to reach for her mouth and she did with no problem. She keep showing him all sorts of stuff. Like how she can roll over pick her legs up, rock back in forth, roll to one side etc. He was stunned. She talked to him but not as much as she did Jonathan the coordinator.

The Pharmacists that have been working with the trial came out to see Lizzy. They have known here since she was 8 1/2 month old. They told her what "a Star" she is and that she made DR.Wang "a star" . Total admiration for her. Lizzy is quite a miracle. It makes the ride to CA that was not so good seem quite worth it . They got to see her also in her power chair.

We got to see the Calafiore's !! I was great to meet them. Hayden looks great!! Lizzy fell in love with Jennifer and Hayden. Chris is such a great Daddy also. It was very great to see a newer family that really is working so hard to help their daughter. They fed us dinner!! It was great!! They are so cute

We had a great time with Molly and Andy. They had us over a few evenings for dinner. A cookout one night and lasagna the last night there. They have a friend that is a chief that made a chocolate torte "that was to die for" it was great!!! He also made a great lasagna. They treated us to the museum in golden gate park(the aquarium part that Lizzy just loved) and lots of great conversation. It always so nice to see them. Paul finally got to meet them and he loves as much as we do. Every night on the road Lizzy would say where is Molly and Andy at!! She wanted so much to see them. They finally got to see the "Real Lizzy" and how ornery she is.

I had an accident a day after we got to CA on Monday the 20th. A bad one... Lizzy and I were in the parking lot at the motel. They have murals on the wall that I wanted her to see. She was in her power chair and I was walking on the side of her with her suction machine. So, I turned and said "Lizzy turn this way and look " well..... she clipped me some how and I fell over her power chair on top of the suction machine. Lizzy is no way was hurt it was me. I hit my face on the pavement (big ol bruise on my face and a eye) . I have bruised chest and side. I still hurt very bad. It was not Lizzy's fault. Paul had turned up her chair to 7 and I am not at all used to her with those higher speeds. I have no insurance anymore so if I do not start feeling better by Thursday I will call DR. Hough. My face feels better but my chest and side still hurt. I have been taking Motrin and a pain killer at night.
It was quite an experience.

Thank you for all that help us get to CA, home and helped us while we were there. Your support and prayers means so much to us. We are home and Lizzy did great. It warms my heart to think how so many cared so much about Lizzy to help us get to California and home safely.

Elizabeth is truly a wonderful kid and so full of life. I taught her at a very young age "You can do anything you want to do some way some how."
As Lizzy says " I love you all from my heart to yours"

"We believe in miracles because we live with one"

Many prayers for the Panno family. Our neighbor Frank lost his son John while he was jogging last Thursday. John was a year and day older than me. So very sad to come home to this news.

http://www.pontiacdailyleader.com/obituaries/x2141121685/John-J-Panno-52-of-Pontiac?popular=true


www.our-sma-angels.com/elizabeth

Thank you (Spinal Muscular Atrophy)

Sorry, I have been MIA online this past week. Christen has been sick this week(She is on antibiotic) and I am keeping her clear from Lizzy and me. She is better but still has a hacking cough. Ewwwww all those GERMS. I am not wanting to get sick or get Lizzy sick while on our road trip this coming week. So, I have been chasing my tail all week not getting caught up or at the a point I can pack yet. Its been frustrating to say the least.

The Bake sale. CAR wash was really great!! THANK YOU SO MUCH!!! They raised around $500.00!! That is such a big help. OMG! Thank you Friends , family and people in our community of Pontiac for your support and help!! Today my daughter Dana has a car show at the park and runs a concession stand and selling some of the Boutique hair bows I made also. She has already sold 5 this morning so that is GREAT. AT $4.00 A PIECE that will help too. We have enough money for motels room and gas now so we should be good!! Thank you to the many great friends we have!!!

Lizzy is doing pretty good even though the humidity is so thick you can cut it with a knife.
She has grown so much this year that some of her summer clothes that were bought in May are too small!

Lizzy will not be the MDA Good Will Ambassador for central IL this year so that is one less thing we have to worry about. We can SLOW down on feeling obligated to go to things we have no time for .. Don't get me wrong we will be at the telethon and some other MDA things. Lizzy has been the ambassador for three years running and that was quite an honor but we felt obligated to do and go to EVERY function that involved the MDA. If Lizzy was not sick or we were not in CA we rearranged our schedule to make sure we made an appearance. This next year if we have something else to do then we will pass and not change or plans. We will still be at the telethon with Lizzy this year. Other kids also need that honor and the chance to help the MDA . It really was time for us to take a break ...... ahhhhhhh. . As, you all know it takes time for us to go any where.

Hope you are having great summer!!! Keep us in your prayers we leave WED!! Many Prayers to my friend Mary and her family. Many prayers for MJ too!!

Will leave Thursday to CA so with every thing I have to do I probably will not be around much this week either.

So, if I owe you something by mail I will send it after Christen is totally WELL. I am not sending that germ any where!!

We believe in miracles because we live with one!!

www.our-sma-angels.com/elizabeth

Articles on Lizzy (Spinal Muscular Atrophy)

Rules Keep Pontiac Girl Grounded

By Sheila Shelton
Pontiac Daily Leader
Wed Jul 08, 2009, 11:52 AM CDT
http://www.pontiacdailyleader.com/news/x488830394/Rules-keep-Pontiac-girl-grounded

http://www.pontiacdailyleader.com/news/x488830355/Event-garners-donation-to-promoter-s-favorite-charity


Pontiac, Ill. -
Elizabeth Hallam of Pontiac is a 5-year-old who was born with a type of spinal muscular atrophy (SMA) that has caused her to need to be treated by physicians in California three or four times a year. This plan has worked for the child until this year.
New Federal Aviation Administration (FAA) rules have put a huge stumbling block in her way.
Instead of being able to fly to California for treatment this year, Elizabeth’s family will have to drive her to California for treatment of the SMA type 1 disease known as Werdnig-Hoffman disease.
The FAA now says that travelers with respiratory difficulties cannot fly without new types of labeling on medical equipment.
According to FAA guidelines, “Travelers with respiratory difficulties who use commercial airlines need to be aware of a new labeling requirement for ventilators, respirators, positive airway pressure devices and personal oxygen concentrators.”
The new regulations require special labels on these machines to ensure that they meet FAA requirements for medical equipment. Trying to travel without following the new regulations may result in passengers being denied a seat, or being required to turn off the respiratory equipment during the flight.
Lizzy, as she is called, will be unable to fly to California for her July 21 treatments with physicians because of these new regulations.
“This will necessitate her family driving her to California,” said family friend Billie Semmens. “This means that the family will have to have funds for gas cards and money that could be used to stay in motels along the way and once in California.
“This means they will also need to be able to have a car good enough to get them to California and back. We are hoping they will be able to rent such a vehicle.”
Friends are hoping to raise money to help the family by holding a bake sale and car wash on Saturday from 10 a.m. to 2 p.m. at Pontiac’s Auto Zone. Monetary donations may also be made to a bank account named “Fighting for Lizzy” that has been established at Freestar Bank.
Lizzy is the daughter of Christen Huette and Brandon Hallam of Pontiac. She is the granddaughter of Herb and Jeanna Huette.
Lizzy was just a few months old when diagnosed with the disease. Her parents were told that she probably would not live past her second birthday without extensive respiratory support, and despite aggressive care, survival could not be guaranteed.
According to Jeanna Huette, the family was able to get Lizzy set up in a Stanford University program for SMA type 1 children with Dr. Ching Wang.
Lizzy first saw Wang on June 10, 2004, in California.
“Lizzy still has the need to fly out to see Dr. Wang every four to six months in order to stay on the medication and in the treatment program,” said Huette. “She is doing so well now, I don’t want to see this come to an end because she cannot fly to California.
“The new FFA guidelines are so stringent that manufacturers of this medical equipment have just not yet been able to achieve all this new labeling.”
Huette said she hopes by any appointment Lizzy may have later this year in California that the labeling situation is resolved.
“Lizzy does so well with this program and we have been able to keep her enrolled in it and been able to get there in a relatively easy manner. I just don’t want government regulations to ruin her method of care,” Huette said.

Event garners donation to promoter’s favorite charity




Event Garners donation to Promote favorite Charity

By Erich Murphy
Pontiac Daily Leader
Wed Jul 08, 2009, 11:45 AM CDT



Pontiac, Ill. -
Four car owners can claim to have the loudest vehicles in Pontiac after results for the Absolute Sound & Security Stereo Competition were recently announced.
The event took place last month at the sponsor’s place of business. Calib Baxter, owner of Absolute Sound & Security, put on the event to raise money for the Muscular Dystrophy Association.
The proceeds tallied $500 that Baxter ceremoniously gave MDA Tuesday when he presented the check to his niece, Elizabeth Hallam. Hallam has spinal muscular atrophy. The check will be sent to MDA.
Baxter said in June that this cause has special meaning to him and that his car club goes to Peoria to help with the phone bank during the Labor Day telethon.
“It went great,” Baxter said of the event. “I’d like to especially thank all those who helped and the Pontiac Police Department.”
Paul Tharp won the Class 1 title. The speakers for this classification had to be 8 inches to 23 inches. Ben Roe won class 2, which had speaker of 24 inches to 36 inches. The loudest in Class 3, which had speakers 37 inches or larger, was Kevin Schneider. The Outlaw Class winner was Ken McDorman.
Baxter said Absolute Sound & Security hopes to continue to sponsor such events in the future to raise money for MDA.


www.our-sma-angels.com/elizabeth