CHARLOTTE, NC (WBTV) - Dear Sadie,
Happy 2nd Birthday!
Your ambitious parents have a huge day planned, and I'm honored to help explain it.
First of all, you look GREAT! When we originally met, you were 8-months old.
Since then, your mom says you've become obsessed with Sesame Street and already know your ABCs. You're really, really smart.
That's one reason why your parents are fighting hard to find a cure for the cruel Sanfilippo Syndrome. They want to get you in a drug trial before Sanfilippo starts reaching your brain.
You're too young, Sadie, to know that Sanfilippo is known as "Childhood Alzheimer's." It takes children away from their parents, right in front of their eyes. Ever since you were diagnosed at 3-months-old, your mom and dad were told that age two or three is normally when children start losing everything they've learned.
There's no cure for Sanfilippo. Most children die in their early teens. So today, Sadie, this milestone birthday is bittersweet. Today is the day that begins the age your parents have been warned about your whole life.
Which is why today, March 8th, they're doing two special things.
Number one thing: They're building a time capsule. They're collecting letters, videos, cards, pictures, etc. they'll open on your 18th birthday.
They hope and pray you will be cured at that time and be able to read everything yourself. In case you're not here, however, they're collecting things now to help explain this time in your life and the impact you have.
They'd love for anyone reading this letter -- a friend or stranger -- to send something for the time capsule. Anyone. Be creative. Just send soon.
They can mail the cards, letters, or sweet momentos to: Sadie Haywood, 603 West Allenton Street, Mount Gilead, NC 27306.
Number two thing involves money. Your parents, Sadie, are trying to raise $10,000 for the Cure Sanfilippo Foundation. There are clinical trials that can help children with this disease. The problem is (the problem with all trials for rare diseases is), the trials aren't adequately funded and only a few children can be accepted at a time.
They're fighting for funding to make the clinical trials more accessible to all children like you. They say this is your only hope for the future.
Two big goals for one big birthday. More on both here: http://sadieturns2.com
This is my note to you. I hope your parents can print it out to put in the time capsule. Maybe they'll print out the comments, too.
I deeply hope you're the one reading it on March 8th, 2034.
Happy 2nd birthday, Sadie. You're beautiful.
PS: Here's a #MollysKids article about Sadie one year ago on her first birthday: http://tinyurl.com/SadieHaywood2MKs
**Editor's note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it's written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.