Wednesday, January 17, 2007

I have to say that I continue to be touched by this contest process. Yesterday when I was talking w/ the winning nominator I mentioned the free sitting she would be receiving and she was totally surprised. She had made the nomination of the McGeoy family completely for them & was unaware that she would receive anything. Then when I contacted the other nominators that I wanted to give their nominees a free sitting but could not extend a sitting to them. They too had a similar reaction as Angela. They didn't know there a free sitting possibility to the nominator. This means so much to me because the my purpose of the contest was to give and it became apparent that that was also the sole goal of the nominators. So great! Last night I had the pleasure of talking w/ Dave McGeoy. We had a wonderful conversation and I cannot wait to photograph his family next week!!

Here is a nomination that I received from Amanda Downing:
"I met the McNair family in September. I had just moved to Lake Forest Park and knew no one in the North End. After being here about a week or two I had a knock on my door and it was 2 women (Kara & Sarah) about my age with strollers. They said they had heard I had moved into the neighborhood and had a baby and would I like to go on a walk. ( I know I couldn't believe it either..... I didn't think people did that sort of thing) So I was thrilled and we all went for a walk. Half way through the walk they said I have to meet Jenny McNair who was just moving into the neighborhood that day. We ended up at her house and we all bonded! We chatted for hours and introduced all the babes. Between the four of us there are 2 boys and 2 girls. 2 were born in June '06 and 2 in July '06. What are the odds of meeting 3 great women all with kids the exact age as mine right. We started hanging out regularly. Within a week or so Jenny tells me that Lily (her daughter) has what is called floppy baby syndrome. I had never heard of this and not knowing them well didn't ask too many questions. What I got out of it was that she had trouble moving her legs mainly and they were going through some tests and what not at Childrens hospital. So a little more time goes by and one of the other girls (Sarah) calls and says that there is a rare genetic disease that they are going to test Lily for called SMA, Spinal Muscular Atrophy. Basically no movement of extremities. None of us had heard of this so we all immediately hit the internet to get as much info as possible. We were all still hopeful and trying to be positive since it was so rare.

They got the tests back a week or so later and to all of our shock she had it. Since she is so young she is categorized as Type 1. Type 1 kids do not usually live past the age of 2. We were all devastated. The first month+ was a huge adjustment for them, lots of family time. They are now partaking in a study at Stanford for SMA kids for a new drug that slows the progression. They don't know if Lily is getting the medicine or a placebo but she seems to be progressing. She has had minimal movement in her legs which has not happened before!

But here is the real shiny part of this family. Jenny & Tony (her husband) are so hopeful and encouraging about their situation. They haven't looked at this as a death sentence for her they are hopeful every day that she will get stronger and somehow beat this. If the drug helps her to the point where she may be able to sit up then she could get upgraded to Type II which would give them more time for research to find them a cure. Through all of this Jenny smiles every day! She has the greatest dreams for Lily and cherishes everyday with her. If I was in her position I don't know that I could handle it nearly as well as she has. I admire her strength and faith in what she has been dealt. I know she has her moments of breakdown when no one is around but she has taken the approach to be as positive as possible which will only benefit Lily. And Lily, she has a smile and giggle that is magneti c. She will babble at you and make funny noises that are priceless. She may not be as physically strong as other babies her age but she is one of the strongest people I know. She has been through so much in her first 6 months of life. She definitely gets it from her mom. I call her Anthony's girlfriend. And to round out there wonderful family is Tony. He is a gem! I can't imagine how tough this has been on him to watch his wife and daughter go through all of this and feel helpless but you wouldn't know it. He cooks for all of us when we come over, he hangs out with all the babies and likes his time with each of them. He is making sure he gets to know each of them. He is funny and thoughtful and takes great care of his girls.

I don't know what the future holds for Lily but I am hopeful and will continue to be. I do know that I will be friends with this family for the rest of my life. Lily will always be one of Anthony's first friends. I was so fortunate to meet these 3 other women. Jenny has taught me alot about life and enjoying each and everyday. Life really can be short as cliche as that sounds. I now want to slow down, enjoy everyday with my family and friends and be so thankful for what I have."
I believe the McNair family is also special and am excited to give them a free sitting. I am really looking forward to meeting them.

2 comments:

Anonymous said...

Hi! I have a three year old son with SMA Type I. Please feel free to let Jenny and her family know that we'd love to chat with them.

Kim S
charlies-mom@our-sma-angels.com or website www.our-sma-angels.com/charlie

Anonymous said...

Hi - I have a two year old daughter with SMA Type II. Same as the comment above, please let Jenny and her family know that if they'd like to chat we're available.

hannabanana.sma @ gmail . com