@savingsadierae: One of the top reasons we advocate is to help others get diagnosed with Sanfilippo Syndrome earlier. Early diagnosis leads to earlier enrollment in clinical trials and better outcomes. #advocacy #sanfilipposyndrome #genetictesting #clinicaltrial #geneticdisorder #advocate

Sadie & Fam
Sadie & Fam
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Region: US
Wednesday 14 February 2024 03:47:44 GMT
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patriciasmithpazo
patriciasmithpazo :
If there is no treatment, why is diagnosis so important?
2024-05-20 06:21:12
2
jolynnvarrati
Jolynn Varrati :
was there a way that you both could of been tested prior? don't both parents have to be carriers? since he has a family mbr with it so he was probably a carrier but don't you have to be to?
2024-05-01 10:10:59
0
keariabailey216
Kearia Bailey :
I have a 15 month old , she isn’t walking yet and obviously her pediatrician wants her to start therapy, she was in the nicu for a month for respiratory issues, she had a whole in her lung but caused
2024-04-30 21:13:51
1
xxxemilygracexxx
Emily :
That is such a blessing! I am 110% sure my son has my genetic brain disorder but can’t get anyone to test him since it involves a MRI. So frustrating.
2024-02-14 23:09:00
41
eastcoastgirl3
Dana :
Baby Sadie is so adorable. I just adore her♥️♥️
2024-02-14 05:30:20
49
spoogin
Blee bloo :
Just curious, does Sadie have any siblings?
2024-02-14 09:13:47
2
vonnie.1971
Vonnie :
Is it a gene mutation? Sadie is so stinking cute! She just reminds me of Shirley temple🥰
2024-02-14 22:54:42
13
jasminn_a92
Jasmin🌈🌹 :
Because if the early diagnosis did she get the stem cell treatment? X
2024-02-22 00:20:57
1
rachdacquisto
Rach :
I just realised I listened to your episode on the rare life podcast recently. Thankyou for opening up and sharing your story 🤍 certainly helps me feel less alone in this journey xx
2024-02-14 20:50:29
6
luis53979
Luis A. 53979 :
A mothers intuition, what a wonderful blessing that you have each other. You are an inspiration of what a mother should be.
2024-02-14 12:01:56
21
kanzadygailwierwille
Kanzady Gail Wierwille :
Thank you for sharing your family 💗 Shes beautiful
2024-02-14 03:53:38
16
genxrainbowbrite
Gen X Rainbow Brite :
Sadie is SOOOOOO CUTE 🥰
2024-02-16 03:42:13
8
babytwizzler420
Ashley& Ceasar :
Her big beautiful eyes.🤩
2024-02-14 17:35:29
8
muppyburks
LauraMac1127 :
Thank you for such valuable information🙏
2024-02-14 04:08:26
9
irenehill1
Irene hill :
there’s a new clinic in Atlanta Children’s Healthcare
2024-02-18 17:48:46
7
noelle1125
noelle1125 :
Nothing like a mother’s intuition!
2024-02-15 05:34:01
4
lealaster32
Amy Brock :
the most precious baby girl. her beauty is just pure, I love her💜💜
2024-02-14 13:43:29
6
patrick_is_awesome_15
Patrick Neher :
Her eyes are so beautiful wow
2024-02-14 04:35:37
5
twinmommabhall
Bhall10003 :
Way to advocate!
2024-04-30 13:00:35
2
jbcyrous
jbcyrous :
Sadie is such a little cutie!!! I LOVE her little personality. ❤️❤️❤️
2024-02-15 05:32:43
4
d33ni3
Deenie👜snob :
I miss seeing Sadie. Thank you for sharing her with us♥️
2024-02-14 04:26:36
4
lmonnett
user7235791373727 :
Thank you for sharing such important information! ❤️She is so beautiful!❤️
2024-02-14 04:25:51
4
savageheartxo
Lisa🌱🌱SavageHeartXO :
We as parents are definitely our babies biggest advocates.
2024-02-17 07:25:12
3
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