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.
IS kids have had one voice in the past- Danielle Foltz talked to the Joint Economic Committee in July about the price of rare disease drugs. 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.