Friday, August 28, 2009

Tonight is just one of those nights that I laid in bed thinking 'What the ****?' How can MY child, my Eli, be dead? That's one of those things that happens to other people. I am never those what is going on? I hate begging people for donations. I am not a fundraiser type of person. I want to be picking out school supplies or kissing a scrapped elbow. Why is my life what it is now?

It has been such a strange week for me. I miss Eli, but I really miss all the hopes and dreams I had of being a mom. Will I ever get to read all those children's books I bought? Will any of those clothes I bought, the ones all the way up to 4 and 5T ever be worn? I buried my son, but those hopes, those plans...they are still here. I wish I could just be part of the normal folks, the ones who can just decide they want a baby and start working on it. I don't get that easy route now. I get initials... SMA, PGD, IVF, CVS, and a 25% chance of bad things happening. I get a sad husband who just really wants to be a dad.

I wish it was a simple as that big red easy button...

Cook books have arrived!!

They are finally here! Yay! I'm taking orders now, but I'll have to figure out the shipping cost once I know how many you want and go to the post office to figure out the easiest way to ship them. Please leave a message here or email me with your order. If you email, please include your shipping address so I'll have that ready! I'll email you back with the final cost and we can go from there! $12 per book. kyann22 at

Thursday, August 27, 2009

Get SMA on Oprah

If you want to participate in this letter writing campaign, please do!

Hi SMA Families:
We are all working hard to raise awareness of SMA and what better way to reach the masses than on the Oprah Winfrey Show. We know many of you have contacted her in the past and we know this is a long shot, but we hope that through a collaborative effort and a little PR work, we may be able to garner some much needed attention. So, we want your story about SMA.

The plan is to restuff every letter in matching brightly colored envelopes and then send all the letters in one big package.

Here is what we are asking:
1) Write your letter. Your letter should be highly personal, about your experience, your child, your thoughts and why SMA should be on the Oprah Winfrey Show. Each family is welcome to submit more than one letter, but they should each be written by a different person in the family and individually written (for example, mother, father and grandmother are welcome to each submit a letter, but again they should all be individually and personally written).

2) Please keep letters to ONE page. (We know this is difficult, but a MUST per PR advice!)

3) Include pictures, links to your personal blogs, decorate your letter in any way you want.

4) Mail letters NO LATER than September 5th to:
Devon Lovelace
PO BOX 1611
Gladewater, TX 75647

5) Letters will be restuffed and sent out on September 15th. If you have any questions, please contact either Audra Butler, Devon Lovelace, Donna Trakas or Victoria Strong.
We are looking forward to receiving your letter and thank you for all of your hard work,
Audra, Devon, Donna, & Victoria

Wednesday, August 26, 2009

Once you start having a few more good days than bad days, the bad ones will hit you like a ton of bricks. I feel like I've been run over by a steamroller tonight. It's been a while since I've been up until 3am, but it still feels normal in a way.

Unite for the Cure is on my mind a lot tonight, as is Eli.

If any of our local friends have any ideas of places we could do a garage sale, bake sale, or pancake breakfast, please let me know. Any other fundraising ideas are also welcome. We need some help from our local gang getting things going. Our Wal-Mart is already booked out for the year, so the busiest place around is out....

Tuesday, August 25, 2009

Busy Day...

Best part is, we are actually going to sell them as part of our fundraiser! Merry-Go-Round in Kingwood has been sweet enough to let me put some in the store to sell for Unite for the Cure! Awesome! If you need cards, let me know! $2 minimum donation per card. :)

Monday, August 24, 2009


I have actually be doing some paper crafts the past two days! It only took a friend and a trip to Michael's to get me going. I've renewed my love for reading and crafts this week. It is nice to be busy.

Thank you!

Sending a big thank you to Penny for joining us in funding this hopeful cure for SMA! Please consider donating if you can.

Thursday, August 20, 2009


Our computer crashed and we had issues finding some of our pictures from November and December...horrible considering that was the only Christmas we'd get with Eli. I was happy to log in to my Kodak Gallery tonight and see they had an option to download the high resolution version of any pictures that had been uploaded to their website. I am so thankful I had uploaded all of Eli's we have these back, safe and sound. I am going to write Kodak a HUGE letter of thanks. I'm going to bed in tears after looking at so many pictures of my beautiful son, but I'm happy knowing I know have his pictures back.

Please help....

You know, I come here and post all the time asking for help with this or that, but tonight I come here begging, pleading for your help. I know there are quite a few of you out there who still read and check up on us and I'm hoping our story, our Eli have had enough of an effect that you would be willing to do a little to help our cause. The Unite for the Cure campaign is the first hope I've had that we could actually see an end to SMA. How sad would it be to have the possible cure out there but it not be tested for lack of funding? How would you feel if you were the Gaynors, working your butts off to raise money to help fund it in hopes that your daughter might be one of the first babies in the trial...and then it be cancelled because not enough money was available to make it happen? Please, please, PLEASE consider helping... even if it is just $5, please.

You would think it wouldn't be so important to me, seeing as how we've already lost Eli and there's really nothing in it for us. That is so not the case. I hurt every single time I hear about another baby being diagnosed. I cry with the moms who have lost their babies on the birthdays they should be celebrating. I cry for days when I found out another baby has died. Why? because I know the hell the parents are/will be going through. I live it every single day of my life. A cure is the only way to make it make me stop having to live death over and over again. Please help. I don't even care if it is a dollar. Do it for Gwendolyn, Sophia, and all the other babies that still have a chance.

It is easy to donate. You can go to the FSMA website and donate by credit/debit card. If you do this, please make sure to write Beasley-Wright in the comments section so we know you are doing it out of love for us. You can also mail checks to:

Unite For The Cure
c/o Gwendolyn Strong Foundation
27 W. Anapamu Street, #177
Santa Barbara, California 93101

Please make checks payable to “Families of SMA” and be sure to write “Unite For The Cure/Family name” in the MEMO on the check; for example “Unite for the Cure/Beasley-Wright"

Be part of it with us. You have until the end of November....start a change jar on your counter, skip a trip to Starbucks, take your lunch one day...just a little thing now and then and see what you can save up in these next few months. Help us END SMA!

Tuesday, August 18, 2009

Unite for the Cure

Please visit to read about the effort I mentioned yesterday. It is the official annoucement of the new effort we have joined to help fund the latest SMA clinical trial! It is very exciting to think this could be THE CURE we are all hoping for. With your help, I hope we can not only raise the $5000, but hopefully even more! You can also visit the Unite for the Cure website to find out more information or to make a donation. United, we can do this!

Monday, August 17, 2009

We are going to need some help...

Sorry for the lack of recent posts...just been a strange time here in the Beasley-Wright house. We haven't had much going on lately, so not much to report.

We are getting ready to kick off a big fundraising effort soon. We have been asked to try to raise $5000 by January to help support a very promising clinical trial for a possible cure for SMA. We would love to have people from all over the country join in and help out if you could. This research effort could be the fix we have been waiting on, but without funding, it will not be possible. If you have any ideas for fundraisers or would like to do something to help us meet our goal, please let me know. Hopefully a few of you can spare a weekend day to host a bake sale or a lemonade stand to help the best cause ever...saving babies! I'll have more information and a website to send in the donations once the details are all worked out.

Thursday, August 13, 2009

Weigh to Go for SMA

Good News! I lost 2.8lbs last week. I need some people to keep me motivated, so please consider joining in the fight against SMA by supporting my weight loss efforts. You can email/comment and pledge to donate a dollar amount per pound that I lose or make a one-time donation here.

I'm trying to post some of our favorite recipes here, so be sure to check in every now and then to see if there is something you might want to try.

Tuesday, August 11, 2009

KY Walk and Roll for FSMA 2009

Here are a few pictures of my parents and their friends at the Kentucky walk. They actually made the Lexington Herald-Leader on Sunday! I'm so proud of them for driving down and walking to honor our little guy all the way up there. For more pictures of the walk, please visit the newpaper's website.

SMA Candle Lighting 2009

MJ put together this video to show all the candle pictures sent in from people all around the world.

Sunday, August 9, 2009

This weekend has been a rough one to say the least. Yesterday seemed so long and I felt like Jason was never going to make it home. He had a late add-on so he wasn't here at 8 to light the candles with me. It made me sad, but it was nothing he could have changed. I still had them going when he came home so that he didn't totally miss out. Eli was on my mind so much last night that I had a horrible time sleeping.

I got back up and found this horrible article; it made me so angry that I really couldn't sleep until late into the night. It carried over into the morning and I woke up too early and grumpy. I had to write a paper for school, which didn't help the day very much. Jason and I did get out and have lunch and browse around Target, but I guess my horrible mood killed any chance of a "good" time today. We are both on different wavelengths again and not communicating very well. This whole process is like a giant roller coaster and I guess we are on another free fall. All I know is that we love each other and I hope that's enough to get us through.

Through Eli's Eyes

The website for the foundation is up and running!

Saturday, August 8, 2009

Grief is so strange. It can overtake you and have you on your knees crying until you are breathless with no warning.

I hope everyone was able to light a candle tonight. It is still not 8 here. I'll post pictures tonight or tomorrow of ours.

Friday, August 7, 2009

Weigh To Go for SMA!

I’ve got a “WEIGH TO GO FOR SMA!” Along with other Families of SMA Greater Florida Chapter members, I am losing weight over the next five months to raise awareness for the number one genetic killer of children under the age of two. My goal is to lose 25 pounds and raise $500 dollars. Help me stay motivated and meet my goals by making a “per pound pledge” to me or a one-time donation at I will send you monthly updates of my progress, and let you know what my total loss is in December.

Thank you for your support!


If you ever find yourself in my shoes (and I hope you never do), one of the first people you'll meet is MJ. MJ has been living with SMA for over twenty years now and she is one of the most amazing people I know. I hope I get to meet her in person some day so I can give her a HUGE hug. She is so supportive to both moms of angels and moms of fighters. She loves the kids. I probably don't even know half of the things she does to give back to the community. She makes websites for the kids; if you see Eli's Our SMA Angels page, she did that one. She and her caregiver Brenda have sent out over 700 blankets to SMA kids around the world. She's always offering hugs and words of comfort to those of us who are having really bad days missing our little ones.

MJ has not had an easy life, but she never focuses on that part. I had no idea how much loss she herself had lived though until I read more here. You will never hear her mention the negative things though. She makes me want to be a better, stronger person. If any of my fellow SMA moms stop by here, I bet they will also have a story or two about MJ. She touches all of us.

I was very sad when I read her Facebook status today. She is currently on vacation, taking some needed time off from college and all the countless other things she is involved in. Yesterday she heard a little girl ask her mom what happened to her, referring to MJ. The mom replied "She was a very bad girl". How sad is that? Rather than take the opportunity to teach her daughter acceptance, that some people are not as physically blessed as they are, she said something hurtful that her daughter will always remember and associate with anyone facing a physical challenge. We wonder how discrimination against people can continue to go on and and I think that's a good of example of passing it down to the next generation. I have tears in my eyes from even having to write this. I love MJ and I hate to know people are so insensitive.

Please remember to light a candle for all of the SMA angels tomorrow night at 8pm. Pass on the petition address. Help us stop SMA once and for all.

Tuesday, August 4, 2009

Eli's Tree

Last year
We bought this crape myrtle last year on clearance at Lowe's. It was not the healthiest looking tree, but it was $4, so I figured it wasn't a huge loss if it didn't make it. We waited all summer last year for it to bloom and it just never did. The day we got home with Eli we looked out and it had so many blooms. I have no idea how that happened in just two days, but it was great. This year we watched all the crape myrtles in the area bloom and bloom while ours stayed green. A few weeks ago we looked out to find it full of blooms again. I guess it will always wait until close to August to get going... It will forever be our Eli's tree.

Monday, August 3, 2009

We lost another baby today...just 2 days shy of his first birthday. Many hugs go out to his parents. We really have to beat this thing so I don't have to type this ever again.

SMA Awareness Video

Victoria Strong, Gwendolyn's mom and creator of the petition, put together the most amazing video to help promote awareness of SMA. It is SO powerful. I still cry every time I watch it. Please go here to watch...and be sure to have your sound on.

Sunday, August 2, 2009

Happy Birthday Eli

Happy Birthday Eli.

1st Annual Through Eli's Eyes Family Fun 5K

My great friend Kim who made it all happen
Two of my favorite girls!

Our Family

Donation Box made by Crista (so cute!)
Donations for the Ronald McDonald House
Some of the walkers

We had a great turnout today. We were able to raise $557 for FSMA. For something that started out as a simple walk of remembrance for family and close friends, I think it was amazing how many people we did have and how much money we were able to raise. Thanks to everyone who came and joined us.
I also want to say a special thanks to my friend Melanee. She's a great lady from Colorado who I made friends with online while we were both pregnant. She has been so supportive of all our efforts to remember our son and I can't thank her enough. She went out and walked up there today to support us and remember our boy. I hope I get to meet her one day and give her a huge hug!