Tuesday, September 30, 2008

"In this life we cannot do great things. We can only do small things with great love." Mother Teresa

However much I would like to push from my memory, the reason, circumstance and motivation behind the creation of this blog, I cannot. This site began as an outlet, mostly for me, in the aftermath of Zoey's Infantile Spasms diagnosis. A very sad time for us all. An especially dark time, for me. An entirely unfair time for Zoey. Through this site I began journaling and networking and the beauty of friendships soon followed.Finding other families living the very same nightmare.All of us walking bleary eyed through uncharted territory. Wondering each and everyday how we found ourselves in this place and wondering how the heck do we find our way out? Some have. Others are still searching. Today this email came through my box. My reminder. I pass it on, in portion, as a reminder to some or for many, as a stark introduction to what so many children and families are battling daily.Marissa's dad is a doer. It started with Marissa's Bunny and has now morphed it into the idea, that if we all band together, all of our voices, we can make a difference. This post is long. If you see it to the end... thank you. If you pass it on... even better.
Here is my "small thing."

One in Eight
Annandale, VA
September 30, 2008.

Stand warned, there’s mathematics and drama ahead.

• There are approximately 305,297,000 people in the USA

14.02 children are born (and survive three months) per 1000 people in the USA every year.

= 4,280,000 babies will be born and survive to three months old

Infantile spasms prevalences in research are variable and depend on which source you refer to. I’m going to estimate conservatively and assume a 1:1 male to female ratio, and use 1:4000 for males, and 1:6000 for females, averaging out to 1:5000 births afflicted by infantile spasms. The ratio is actually 1.05 to 1 male to female, so the actual number of IS kids is a bit higher.

So, with 4.28 million babies and a 1:5000 infantile spasms affliction rate:

• 856 kids a year are diagnosed with infantile spasms.

Infantile spasms resolves itself into something else at approximately 2 and a half years of age. Following that logic:

• 2,140 sufferers of infantile spasms currently less than 2.5 years old.

Infantile spasms is fatal in 1 in 20 of these kids before age 3, not due to accident. That makes 42 kids a year. ACTH treatment mortality ranges depending on the literature between 1:20 and 1:30. For the sake of argument, we’ll say 1:30, and that will account for both kids that go on multiple courses of ACTH and kids that never do. That’s still an additional 29 kids a year.

• 42+29 = 71 kids die a year from infantile spasm related causes

Removing all mortality statistics from IS kids, that’s 786 kids that survive to age 3. Accidents from drop seizures following IS resolution claim some more before adulthood at age 18. The numbers on accidents are fairly staggering depending on your source, but I’ll call it 1:20 again, for the sake of conservatism - this number goes very high in some studies. That’s another 40 kids before age 18. 746 kids survive to age 18. Overall mortality before age 18 is then about 12%- one in eight.

One more time, and in bold. One in Eight.

Look around your town, your supermarket, your place of work. Would you notice one in eight people gone? In what world is a 1 in 8 mortality rate un-noticeable or inconsequential? How many of these kids can be saved with better research, quicker or more accurate diagnoses, more community awareness, or a better support mechanism? I’m sure it’s not all of them, but given the current state of research on IS, a small improvement would make a huge difference.

Penny-arcade.com helped me reach over 60,000 more people, but it’s still not enough. I’m not Superman. I can’t sweep across the country bearing a red cape and talk personally to the parents of all 2,140 kids with infantile spasms, I can’t even catch the new diagnoses. It’s asking a lot of the parents of IS kids to be a public voice for their children individually.

Even with everything else going on in our lives, I’ve started the wheels in motion for a foundation for promoting awareness and providing support to IS parents. This is going to take time and money, so be patient with us. A week or so ago, I spoke with Mike Bartenhagen, another face in the battle against infantile spasms, about this and we’re both on board with this idea. As a group, we’re stronger and louder than we’d ever be individually.

If you want to help, please contact us. If you’re a parent of an IS kid, and feel you can offer sympathy, support, or advice to other IS parents in the future, especially the ones with new diagnoses, please let me know. Financial help is always welcome- please donate through the front page. These are the early, fragile days of any new foundation-to-be, and any and all help is welcome.

ABOUT MARISSASBUNNY.COM - Marissa is a baby girl who was diagnosed with Infantile Spasms on February 15th of 2008. Infantile Spasms is a serious pediatric epileptic condition that could leave it’s mark on her for years to come. Fairfax is Marissa’s Bunny - a shared name for stuffed rabbits that are traveling the world trying to spread awareness of her disease that has no reliable cure and is hard to relieve. Marissasbunny.com is a website dedicated to spreading the word about infantile spasms, with the goal of better diagnoses and enhanced support for parents with infantile spasm suffering children.

1 comment:

Jackson's Blog said...

Hi Heather~ Thanks for checking in on Jackson and sending prayers our way. You are so sweet and we really appreciate your support!

Tera keeps me informed about you and Zoey a lot. Your blog is very inspiring and Zoey is such a sweet, amazing girl.

I hope to get to know you more!