Labor Day - Holiday Weekend (Spinal Muscular Atrophy Type 1)

Have you ever felt like time is flying right by you? I mean it seems I was a kid not that long ago fighting with my other brother over a baseball bat, mini bike, or the horses. I am 51. My grandmother's age when I picture her in my mind. Sitting back looking back thinking..... has my life been one I chose to live or its just one chose for me? My kids are grown and their kids are growing so fast. Reed Michael my 1st grand-son is 18 now and Lizzy will be six in a few weeks. Where does all the time go? As, a kid a year seemed like forever and now in a blink of an eye its gone. My body feels old but my minds wants to learn and absorb so much more.

Will they find a cure for SMA in my life time? Who will take care of Lizzy like I do when I am gone if there is not a cure? Finding a way to keep Elizabeth strong and healthy consumes my inner being. Making sure she survives this awful disease is my life and helping as many people as I can on the way.

We stayed home from the Telethon this year because Christen insisted we needed a break. Lizzy was the MDA Good will Ambassador for three straight years. It was quite an honor but we stayed very busy doing MDA functions a lot until this summer. We thought it was time for another child to have the spot light in our area. (The MDA here wanted NEW faces this year) They really needed a family that fought so hard to save their child's life. They needed a hero similar Lizzy from this area. The MDA Good Will Ambassador here this year is 2 year old girl from Peoria that was diagnosed at age 1 with SMA. I know 2 year olds are sweet and cute but it just did not feel right to me. Not, that I thought Lizzy should of been the Good Will Ambassador again but I guess I am stereotyping the MDA Good Will Ambassadors. Like the little girl that is National ....Like Luke(last years National ) and Tyler Ingles(From the area tht earned his wings last year) . Exceptional kids. They were/are fighters and just special individuals with so much strength. That is the way I feel about MDA Good Will Ambassadors. Strong minded kids on a mission to help others and to help raise money with their great personalities and intelligence. Their families went above and beyond. You need fighters and a family that goes beyond the dots for their child. Am I wrong? Should I feel bad for feeling this way?

We tried so hard to reach out to this family from Peoria that their daughter is this years Good Will Ambassador when the grandma called me over a year ago. The parents were just going to let nature take over with NO interventions. Grandma had contacted me several times just so upset because the Mom would not do any kind of interventions and the Dad would not do anything with out the Mom's approval. We tried so hard to help them with info NIV protocol from SMA, and of sorts of info Christen and Elizabeth's Dad even went and talked to the little girls Dad and Grandmother over a year ago. She has SMA type 2 no doubt. You can only do so much to help someone. They have to want to be helped. She is a happy little girl but......
It is just strange that this family wanted nothing to with the MDA not so long ago and all of a sudden their daughter is a the Good Will Ambassador.
It bothers me. Its been eating at me all day. I should not worry so much but this little girl and her family represent the MDA for central IL. Their story was not one that stays with your heart. I need to blow it off and forget about it not only bothered but it bothered my whole family.

Lizzy was watching the Telethon today and she is upset because she wanted to go. I made a donation " In honor of Elizabeth Hallam" this morning and on the air they said "in Memory!! " I was so mad. Its local so only a few local big cities see it but how many people think she passed a way from that comment? OH..... that just upsets me.

The MDA wrote Lizzy totally out of the script since we were not gong to be there and have not even acknowledge her at all with all the fundraising and appearances we have done this year and past years. Its like we did not exist anymore in their eyes. Bob(TV anchor) mentioned her just awhile ago and that warmed my heart. He is such a great guy.
Paul and I were going to take Lizzy ourselves today to the telethon we discussed it last night . Christen refused to go I can not lift the power chair with him.
The MDA had called a week or so ago and said they could get us a motel room some where else but with all Lizzy's machines that would not make any sense. I do not know why we could not stay at the motel where the telethon was at. We just could not afford to pay full price for a motel rooms at where the telethon was at. Paul is still not working as much as we would of loved to been apart of it.

The MDA is all about the kids and adults with neuromuscular diseases finding treatments, cures ,equipment and #1 RESEARCH . Its the strongest organization I know and I hope it stays that way.

I am impressed with all the research out there but lets get busy and see some actual results of treatment that is NOT a danger to the kids. 2010 seems like a great year for some Cures or treatments to help People with neuromuscular diseases have a better quality of life.




Interesting article that was sent to me it was published in 2008.

http://www.naturalnews.com/022831_breast_milk_stem_cells_stem_cell.html


Breast Milk Contains Stem Cells
The Perth scientist who made the world-first discovery that human breast milk contains stem cells is confident that within five years scientists will be harvesting them to research treatment for

conditions as far-reaching as spinal injuries, diabetes and Parkinson’s disease.

But what Dr Mark Cregan is excited about right now is the promise that his discovery could be the start of many more exciting

revelations about the potency of breast milk.

He believes that it not only meets all the nutritional needs of a growing infant but contains key markers that guide his or her development into adulthood.

“We already know how breast milk provides for the baby’s nutritional needs, but we are only just beginning to understand that it probably performs many other functions,” says Dr Cregan, a molecular biologist at The University of Western Australia.

He says that, in essence, a new mother’s mammary glands take over from the placenta to provide the development guidance to ensure a baby’s genetic destiny is fulfilled.

“It is setting the baby up for the perfect development,” he says. “We already know that babies who are breast fed have an IQ advantage and that there’s a raft of other health benefits. Researchers also believe

that the protective effects of being breast fed continue well into adult life.

“The point is that many mothers see milks as identical – formula milk and breast milk look the same so they must be the same. But we know now that they are quite different and a lot of the effects of breast milk versus formula don’t become apparent for decades. Formula companies have focussed on matching breast milk’s nutritional qualities but formula can never provide the developmental guidance.”

It was Dr Cregan’s interest in infant health that led him to investigate the complex cellular components of human milk. “I was looking at this vast complexity of cells and I thought, ‘No one knows anything about

them’.”

His hunch was that if breast milk contains all these cells, surely it has their precursors, too?

His team cultured cells from human breast milk and found a population that tested positive for the stem cell marker, nestin.

Further analysis showed that a side population of the stem cells were of multiple lineages with the potential to differentiate into multiple cell types. This means the cells could potentially be “reprogrammed” to form many types of human tissue.

He presented his research at the end of January to 200 of the world’s leading experts in the field at the International Conference of the Society for Research on Human Milk and Lactation in Perth.

“We have shown these cells have all the physical characteristics of stem cells. What we will do next is to see if they behave like stem cells,” he says.

If so, they promise to provide researchers with an entirely ethical means of harvesting stem cells for research without the debate that has dogged the harvesting of cells from embryos.

Further research on immune cells, which have also been found in breast milk and have already been shown to survive the baby’s digestive process, could provide a pathway to developing targets to beat certain viruses or bacteria.
[ 10Feb2008, ScienceNetwork WA,


Many prayers for all that need them.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Just another day in My life (Spinal Muscular Atrophy)

Things seem to be a bit better today. Lizzy is back running back and forth in her power chair getting Lexy things out of her toys bins. Too cute. She threw a major hissy fit today Christen wanted to take her to Walmart. She told her Mom that she didnt want her to take the baby because "the baby needed to stay with her and Nina" too funny.

We have had Lexy almost every day for about a month now. She is growing and so darn sweet. Lizzy loves having her around. I can actually pee with out an audience because Lizzy watches Lexy while I pee! Its great!! LOL

Elizabeth gets her new TLSO and AFOS tomorrow. She is excited. She picked leopard again!!

I am still freaking that Lizzy donor breast milk is being denied. Christen has to call back the local La Leche League. She had a call from them today but was not here and it was too late by the time she got back to call back. I hope its good news!! So, first thing tomorrow she will have to call. I emailed the senator's asst and maybe she will be able to help Lizzy. This has been the worst week I can remember in a long time.
If you have extra Breast milk and you are healthy send it to Lizzy Please!

Paul has inquired about a job in Elk Grove, IL and a few others. Maybe we will be moving. He wants to move right over the border in Wisconsin. He wants to move Lizzy to Wisconsin so she will be closer to DR.Schroth.

Time to get myself to bed so I can lay awake all night long. I can not shut my mind of these days at night. Too much going on up there.

Please pray for all the sick kiddos out there. I heard Ava has RSV and Avery is still in the hospital. MJ has been sick also

Pray for Lizzy to get help with her donor breast milk. She has been on donor breast milk over three years now and NEEDS it so bad!!!!




We believe in Miracles!!
www.our-sma-angels.com/elizabeth

Lizzy needs your help! (Spinal Muscular Atrophy Type 1)

Lizzy is getting better every day. She has been in her power chair the last few days and doing great. Almost over this last illness.

Me on the other hand has had several melt-downs from all that has been going on. Its just never ends all the brick walls and denials for Lizzy. With our other situations going on I am just worn out. Emotionally drained at times.

I even put a post on Craig's list to see if someone would donate their breast milk to Lizzy. I am going to cut her back on the breast milk but.... its not as easy as it sounds. I have her diet perfect for her and it took many years to get here. Adding things is very difficult because she is so sensitive to food and changes in general. I think I will try adding unflavored Pedialite to her every day mixture with some other baby foods. I use it when Lizzy is sick with Tolerex and breast milk. I have been using Pedilite in Lizzy's formula mixture before she was diagnosed. She would not eat it so we had to add orange pedilite in her baby formula to get her to eat it.

I emailed the La Leche League in our area besides surrounding area and NO replies. I had Christen call and talk to an area Le Leche and because of Liability issues they are afraid to help us. Maybe Christen can induce her own milk and quit some of her bad eating habits but the doc said it would be very hard for her to do that if she can at all. I just know this denial really hit me hard.

Today I picked myself up, brushed myself off and will continue to keep fighting for Lizzy as hard as I can.

My plea for help!!

A special needs child with Spinal Muscular Atrophy has an metabolism disorder and needs Donor breast milk to remain healthy. She is no longer able to get from it from donor breast milk bank due to insurance denial. She has a fatty acid metabolism disorder and needs breast milk so badly.

Moms if you are healthy and have some extra to spare please help us. Help us save her life by helping donate your precious gift of your extra breast milk. If its been in the deep freeze its good for a year. If its been in your regular freezer its 6 months. Please read about her in her web-site. She is truly a miracle child. Please help us help her!!

www.our-sma-angels.com/elizabeth

We believe in miracles!!

What else can happen to us? (Spinal Muscular Atrophy)

We just got a letter from the Donor Breast Milk Bank and they are stopping Elizabeth donor breast milk because Lizzy insurance has not been paying . We had no clue they were not paying. Lizzy's insurance had prior approved Lizzy milk so all this time we thought they were paying. What are we going to do? Lizzy has to have that donor breast milk to thrive and survive. I have tried everything I can on Lizzy nothing works better with her tolerex mixture than donor breast milk. She has so many issues with diet because if her disease. Fatty acid metoblism disorder. I am just a mess right now. Tears are flowing down my face. I dont know what to do. This is one thing I can not fix. I have a wonderful lady that is sending a box of her breast milk but I have no clue on how much. Then, when that is gone then what? She is so great to help us but what after its all gone. Lizzy gets 16 ounces of breast milk a day and 20 ounces of breast milk a day when she is sick.
I am just sick.

Paul goes back to work today after his teeth being all pulled. I got the court documents online. The union and his job is ending March 4. No more extentions. We have come to the lasts days.

Lizzy on the other hand is doing great. She is bouncing back. Still not all cleared up yet but ornery as heck and ready to rock and roll. She has been talking about going to Kentucky to see all her friends constantly at CCK. Wonderful place for special need kids.

You ever feel like you have just ran out of all options? Ever feel totally helpless? Every feel like you dont know how you can continue to keep fighting? You ever just get so tired and need a rest and are not able to do that? You know you have to but dont know if you can? Its not like me to give up but..... Lizzy is such a wonderful child and what am I to do this time?

We do believe in miracles and right now we need a few God if you are listening.
www.our-sma-angels.com/elizabeth

Research pays off

We got Lizzy's fasting blood test results in on Monday and I have to say I was pretty excited. The Essential Fatty Acid Profile and her Aminos were just Fantastic. Actually all the results were great!! Its due to her tolerex/ donor breast milk diet!! I am just thrilled. Her neutrophils were slightly low but nothing to worry about according to DR. Kelley and DR. Swoboda. They seem think its the drug she is on. She also had gotten a sinus infection a few days after she had the test done. So we are getting the neutrophils rechecked on Friday.
Fighting to get donor breast milk and the Tolerex is so worth it !! It helps these kids!! The breast milk has "Human Fat" and it is so much easier for these kids to digest than other fats.
Lizzy will be 5 in a few weeks!!!!
Hope you are having a great week. I actually am taking an hour a day for 3 days a week and started going to CURVES last night. I don't usually leave Lizzy much but I have gained SO much weight I need to do this for myself. I hate being this heavy.