The system failed us, we're losing our daughter 😓

Julia John

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Transcript

00:00Her dad will never walk her down the aisle. She won't make it to adulthood.

00:03Sadie was diagnosed with San Filippo syndrome five years ago, and that was the worst on call

00:08I've ever received. The children start out normal, and then they start to lose abilities like walking,

00:14talking, beating themselves, just after a couple of years.

00:20What does this say?

00:23What's your name?

00:24Sadie got lucky, and at age three was able to be part of a clinical trial.

00:32She was given weekly infusions of an enzyme that she was missing, and she got that for

00:38two years. Because of that, she's doing way better than any other children her age with

00:43San Filippo. She's still talking a lot. She loves singing and dancing. She giggles all

00:49the time, and it's just hard to imagine her losing all of that.

00:52Her clinical trial ended. Without that clinical trial, she will start to lose her abilities.

00:59Her mom is desperate to find a new treatment option, but instead, she starts to see her

01:04child slipping away from her.

01:06My name is Sadie.

01:12Sadie.

01:13Hoi.

01:14Hoi.

01:15Hoi.

01:16Hoi.

01:17Hoi.

01:18Hoi.

01:19Hoi.

01:20And you are how old?

01:20One.

01:21Six.

01:22You are six.

01:23So, yeah, I'm six.

01:25So, yeah, I'm six.

01:25I'm six.

01:26I'm six, seven, eight, nine, nine, ten.

01:29My name is Sadie.

01:30My name is Sadie.

01:31My name is Sadie.

01:34What's your name?

01:37What's your name?

01:39San Filippo is, a lot of times it's referred to as a childhood Alzheimer's disease

01:44because it slowly robs the children of their memory.

01:48They will suffer tremendously before they die in like teenage years.

01:53It's a condition that steals childhoods far too soon and lives before they've even properly begun.

01:59I love you in the morning and in the afternoon.

02:10That's right.

02:11I love you in the evening and underneath the moon.

02:18I love you in the morning and in the afternoon.

02:24I love you in the evening and underneath the moon.

02:28For parents, the hardest part isn't just watching the decline.

02:31It's knowing how the story will end.

02:33I never thought that shopping for a flower girl dress would make me cry.

02:37Not tears of joy, even though Sadie is really cute.

02:40I noticed Sadie looking around at all of the wedding dresses and it dawned on me.

02:45I'll never take her wedding dress shopping.

02:47So I had some very special photos taken.

02:50Sadie wearing mommy's wedding dress.

02:52So I can smile through tears when I see these.

02:55It's not the moment I want, but it's the moment I was given and I am so grateful for it.

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