Elizabeth turns 6 years old today (Spinal Muscular Atrophy)

                                      
Happy Birthday to Elizabeth Lee Hallam!!

Six years old. It is hard to believe Elizabeth has turned 6 years old today


She came into our life around 8pm Sept.29,2003. She was a beautiful baby. Shortly after birth the nurse had her on her shoulder I said something . Elizabeth lifted her head and turned her head towards the sound of my voice and I knew a special bound was created at that very moment. Little, did I know that was the first and last time she was able to lift her head.

This little girl changed our lives forever. Many things to deal with the first few year. Illnesses, hospital stays, doctors giving us no hope, lots of tears  and lots of praying . Finally things seemed to get better the older she got. I learned to know what she needed just by the look on her face.

Never had I ever wanted to fly on a plane let alone fly to CA.  We took Lizzy across the country to a clinical trial at Stanford and it was the start of things getting better.

I would talk to a parent or caregiver and hear something was working go see the family doc and he said "If it fits down that G-tube we will try it" Trial and error.  She was having issues digesting her formula in her g-tube so we tried  donor Breast milk with her formula and it worked!! It cured her reflux issues among other things and she started to thrive after that. Then, using pedilite with her formula when she was sick helped her so much also. Things just kept getting better.

I seemed to figure a lot out out after talking to other parents and caregivers,emailing doctors like DR.Kelley and talking to DR.Schroth and DR.Wang. I researched so much. Finding things that helped Lizzy and other kids like her consumed me. It actually consumed me until this  past summer. I took a break from researching and enjoyed living life with Lizzy. She is such a joy and I am honored to have her in my life. For a child to be happy all the time and be healthy that can not sit with out support, stand or walk makes her my hero. Makes you feel like you are doing something right.

I had to learn to figure out how to get Lizzy what she needed no matter if I had to ask for help. I was not that kind of person to let others send us things. I had to do what ever I could to get her what she needed. So, many fights with her DME also to deal with .

I barely left Lizzy's side. I still do not leave much but I do leave occasionally. I would be afraid to take a shower the first year because I was afraid she would die while I was taking a shower. No one can imagine until you live it. I went from having no kids at home and two jobs to no job and hovering over my grand-daughter like an old hen.Was it all worth it ? You betcha.
So, much more to our story in an article I submitted to the Jennifer Trust in the UK a few years back.
http://www.our-sma-angels.com/elizabeth/images/updates/files/Lizzy%20Story.jpg
http://www.our-sma-angels.com/elizabeth/images/updates/files/Lizzy%20story%20pge.jpg

I have met so many wonderful people since this journey began. I didn't not know so many great people existed. I am honored to have met so many.



She has been doing very well the last few years and I thank God every night for that. She is an amazing child and such a gift. She is determined some how some way to do anything she needs to do.

My advice to others if you have been handed a death sentence for your baby do not believe it until you have researched and talked to others that have the same thing. Grandparents if your kids will not fight for your grandchildren you do it if you have the strength and love it takes. I did and so glad I did.

Believe ...in miracles they do exist. We live with a miracle.

Lizzy has been ill since last week and the day after her immunizations but she is getting better. Lizzy has not been sick all summer. Not sure what is going on but she is improving. I think we learned a lesson.... No more immunizations.



Keep Lizzy in your prayers. Please pray for MJ too. She is in the hospital and very ill.

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