So today I woke up and enjoyed my two girls cuddling in bed, windows open, watching Sprout, could a summer day get any better? We came out, opened the other windows, ate breakfast and started playing. How many of us do this and take it for granted? I know I do. I take for granted sometimes the basic parts of my day, like the fact that my daughters are healthy and able to enjoy my day with me, able to lay on the floor and talk by walkie talkies, able to spin around a dresses just because "it spins", and able to wear my sunglasses and pretend to be a diva!
A few weeks ago I was at East Goshen's preschool entertainment series in the park. Which I must say is fabulous!! Thanks EG! We enjoyed our time and came home, for three weeks we enjoyed this series. I received a message on FB from an acquittance noting she had also been there. I realized I had seen her and her daughter and was glad to hear of others enjoying the entertainment provided by East Goshen. I then sat back and realized, she should have been there with 2 girls, not just one. She gave birth to two beautiful little girls about 7 weeks after Mackenzie was born, and a few short months later, one of her little girls became an angel after being diagnosed with SMA.
This is a disease that I never had heard of until a friend had shared this heart wrenching story with me. I to this day, don't understand exactly what SMA is, I am trying to read more and understand more. I do know that at this point it is a fatal disease to these beautiful babies and their families, but that doesn't mean it is hopeless. Apparently it is the #1 genetic killer among children, and is also the closest genetic disease to being cured. It is needs money, funding, needs to spread the word, to get this disease exterminated!
I have found myself over the years, embracing many benefactors, such as American Cancer Society, Red Cross, American Heart Association etc. I chaired Relay for Life for years, and so many other non profits that in one way or another affected myself or my family personally.
SMA has not hit my family, and that is why I am pushing to do something about it. I don't ever want to hear about someone I know having to deal with this. I don't ever want to hear "I am sorry but there is nothing we can do", as so many doctors seem to tell these families. Why in today's technology does it come down to money...why is it that we can create an ipad, ipod, iphone to talk to people next door, across the world or in space but we can't cure these disease that pull apart families. Something needs to change. I hate that fact that so many causes are political, they shouldn't be!
I really want to get involved in this...I want to create a way for all of us to be involved. We can do this, we can stop this disease from taking our children. There is a run called Zane's Run...the name of the beautiful little angel this family is missing. It takes place September 25th this year. I found out the date last week from Zane's mom, and can't believe that it is on Skylar's baptism day....that is quite a coincidence...maybe not. The day that Skylar will be welcomed into the church of God, blessed and celebrated, a huge group of parents, friends and family will be raising money for other babies to have a day like this too, so they don't have to go too heaven too early!
My first goal is to get 1O runners/walkers signed up for this run. But deep down I want to work on something bigger for this event. They have had 35O+ people attend each year, this year, we NEED to double that!! I want to work with this mom and see how I can help make this something even bigger, something newsworthy, something that will create a buzz and raise TONS of money! I LOVE working for the good of others, I love seeing something others or myself did affect someone in a positive way. I love seeing a mom or dad smile knowing someone cares and someone wants to help.
Zane's mom messaged me some stats this am....this is Zane's Run third year, in the past two years, they have raised $25K+ for families of SMA. The funds from this event help purchase MUST HAVE adaptive carbeds for Type 1 children of SMA. Each car seat costs $875!!! Many insurances won't cover it, SHOCKER! Have I mentioned how I am truly not found of the USA's insurance options! Anyway...over the past 2 years, through donations and funds raised, they have purchased 35 beds!!!
So I am asking for 3 things for you to consider today...
1. Are you a runner or like to walk? Resister to run the 5k or 5 mile run or resister to walk or run the 1mile fun run/walk. Early registration fee is $25 for adults and includes an event t shirt.
2. Are you a business owner who could help by sponsoring this event? Sponsorship starts at $1OO.
3. Are you interested in becoming a member of my team? We won't be at the event because of Skylar's baptism, but want to help raise as much money as we can...so it's just a team to raise money, super easy!!
4. Are you interested in donating money to help me fund raise for this event?
So as you go through your day today, think of the things you take for granted with your kids....when you get home from work, do they run and give you a hug, do you see what they colored at camp, or have they made you a necklace out of pasta? Or did you just enjoy dinner at the table together...a family who suffers a lose from SMA won't enjoy any of these things...they miss out on the EVER DAY things so many of us take for granted.
Today, don't take those things for granted...cherish them! & Today, find a way to be a runner, walker, team member or sponsor of this event!!!
Thank you for listening again to the many thins that enter my mind.....I look forward to helping this event and hope you will too!!
For More information go to: www.zanesrun.com or email me crozier1125@aol.com !!
Thanks
xoxo
Joy
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