@savingsadierae: This is not medical advice and I am certainly not a doctor. But we get asked this question a lot. In rare diseases like Sanfilippo, it’s helpful to know what other parents are doing so you can consult with your doctor on various options. #sanfilipposyndrome #medicalmom #raredisease

Sadie & Fam
Sadie & Fam
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Region: US
Thursday 22 February 2024 19:23:41 GMT
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uvulajones
Leigh :
The ABA therapist can go to her school and do it there with her instead of you pulling her out early.
2024-02-22 21:29:50
4
alexgale08
Alex gale :
Does she like the horses? Does she have the same horse?😃🥰🐴xxxxx
2024-02-22 19:31:13
5
userlisa481
userliss :
😳😳😳
2024-02-29 23:00:17
1
maciejturbina
Boadupiciel :
Prozac? :o
2024-02-22 19:37:48
2
sinfullysinatra
SinfullySinatra :
I’m an SLP student and I’m curious what speech therapy looks like for a child like Sadie, if you are comfortable sharing
2024-02-22 21:41:18
18
luis53979
Luis A. 53979 :
You never seize to amaze me MOM. Your amazing commitment to your special daughter Sadie. May our Lord of all comfort strengthens your resolve…
2024-02-23 19:34:49
8
ryanm9894
Ryan Miller :
Obviously it is not our business, but can you speak about where Sadie’s father is?
2024-02-23 04:13:35
5
user_2468398
user7013544425655 :
The trial she was in helped her . Why is that med not available 😭im just interested and know if there were any way you would get it for her
2024-02-25 12:34:26
4
baciebaci
Clare ORourke :
Hi love, is sweet Sadie still eating orally without issue?
2024-02-22 19:33:15
4
marysawyers5
Mary Sawyers :
ABA is really good.
2024-02-23 02:42:35
3
wingingitwith6
Winging it with 6 :
I’m pretty sure Sadie an fam would of tried everything everyday for Sadie. She’s Amazing and I love momma ❤️
2024-02-23 01:38:09
3
jwc3rd
James :
Hug Miss Sadie for me please. She is such a blessing to me. 🤍🙏
2024-02-23 00:20:12
3
patty.scholebo
Patty Scholebo :
😂😂😂
2024-02-23 06:10:35
2
gabriellepickles19
Gabrielle Pickles :
Can you measure the gags?
2024-02-23 01:30:58
2
annietru19
Ann Wilson :
Have you looked into using frequency therapy?
2024-02-23 01:29:32
2
billiekiser
billiekiser :
My momma heart loves your little girl🥹❤️
2024-05-22 02:39:42
1
noseynellie1
noseynellie :
i haven't really noticed her chewing as much as today is that something that has progressed?
2024-03-01 15:17:44
1
ashlynchipley997
ashlynchipley997 :
I hope she doesn't have to take Keppra😞
2024-02-28 07:45:14
1
mayrariveraramo12
mayrariveraramo12 :
my 💖 with you , i have and a utistic Child, he is 34 and the love of my live.
2024-02-26 22:17:00
1
nana1ds
Rosewithoutthorns20 :
You are an amazing mama🙏❤️
2024-02-25 21:33:02
1
animegirlwaifu69
cowboy :
what is the target of aba for a progressive condition like this, if you’re comfortable sharing?
2024-02-24 01:26:52
1
.imacobbler
.imacobbler :
~♡~
2024-02-24 01:26:04
1
deanmoran47
DEANMORAN47 :
🤗🥰❤️All the best to Sadie & you & Dad 🤗
2024-02-23 20:01:16
1
karenkipp8
Karen/ Kiki :
Do Sadie have issues eating? Love you Sadie ❤️❤️❤️❤️
2024-02-23 13:10:53
1
camibell86
camibell86 :
Have you tried colloidal silver?
2024-02-23 06:42:46
1
mayrapadron6
Mayra Padron :
💗💗💗💗
2024-02-23 01:43:09
1
intheusisashitshow
🏳️‍🌈 :
How does the horse Therapy work with her? I’ve heard about it other cases, but how does it help her?
2024-02-23 00:07:55
1
dawnsey88
Dawn :
I am so glad she doesn't have so many meds to take....Hey Sadie girl 🫶🫶🫶💜💜💜💜
2024-02-22 23:24:15
1
robbiekid5
Robbie Kid :
God bless you, Mom!♥️
2024-02-22 20:33:58
1
ibis_1617
ibis (Jesus's version) :
first
2024-02-22 19:27:23
1
user2549866001192
prettylilmamma :
also mullein. mullein for mucus and allergies and lions main for cognitive functions. just some natural things I could think of that may be an option. always praying for Sadie ❤️🙏
2024-06-26 12:21:52
0
emmafindlay22
Emma✌🏽 :
🥰🥰🥰🥰🥺❤️❤️
2024-06-23 10:07:24
0
marqueblount
dut,dut, :
Something
2024-05-04 05:07:35
0
challahbackmary
Mary Rubenstein :
We love our respiratory treatments with a shaken vest and cough assist. Helps us avoid that yucky mucous.
2024-03-11 03:52:58
0
jogrammymelmorrobay
JosGrammyMelMorroBay :
🙏🙏🙏🙏love from Josiah’s family in California ❤️
2024-03-03 22:23:30
0
fam6and61
🩵🦋🥀Ledo🥀🦋🩵 :
🥰🥰🥰🥰
2024-02-29 01:37:06
0
lizziep913
LizzieP :
Just imagine the cost of having this syndrome. 💔 Plus the idea that the baby slowly forgets you.
2024-02-28 00:09:34
0
kierstindiana1732
Kierstin Koopman :
Please look into the stories of ABA survivors. Ik her case is different but listen to those who have been through ABA. Please.
2024-02-27 23:24:00
0
mgl.1961
MG1961 :
💗beautiful child💗
2024-02-26 23:23:47
0
lupitaarreolagerm
OREOTOK :
🙏🙏🙏
2024-02-26 16:44:09
0
duckie_2000
Duck :
Thank you for being so open and educating us more on what y’all’s lives look like. Sadie is such a joy to see on my feed💜
2024-02-24 05:49:07
0
tammyg682
TammyG :
🥰🥰🥰
2024-02-23 03:08:02
0
heatherlippincot
Heather Lippincot745 :
Did you try regular Mucinex?
2024-02-22 19:32:58
0
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