Avenly: A Story of Extreme Hyptonia (Phelan-McDermid syndrome)
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- เผยแพร่เมื่อ 10 ก.ย. 2024
- Avenly lives with Phelan-McDermid syndrome (PMS). The most devastating symptoms for her are seizures and her extreme HYPOTONIA: severely low muscle tension at rest, which impairs development of muscle strength and motor skills.
Help Avenly and learn more at www.cureshank.org
Huge respect to you mom, and to your precious little warrior. I lost one of my two sons, but our time together will always be precious and treasured.
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Exactly right! Well said. How did you find this video? I'm noticing many people started commenting two weeks ago. Was it a repost from somewhere?
my husbands nephew has Phelan MCDermid syndrome. his parents founded the chapter in Florida. He is 28 years old now and was diagnosed at age 4. stay strong mom !
Avenly is so blessed by the best family. ❤️
What an amazing little girl, and family. So much respect and love. I hope your journey gets easier, and your life continues to be fulfilling. Keep going Mom. You can do this. You are being an amazing warrior and advocate for your family ❤
Thank you for sharing your story to encourage many of us whether we are mothers or women with no children. May God continue to bless your with strength to care for your child.
💞Avenly is blessed to have a family w/so much love and strength...her personality reflects how nurtured and loved she is! You are a phenomenal MOM!💕 Avenly has the face of an angel and a contagious beautiful smile!
I can't finish watching it cause I can't stop crying 💔🥺 She is such a beautiful girl with so much love around her. Love and admiration to Mom. God bless everyone. 🌹💝🌹💝
This poor kid😢
Hang in there mom! Hugs
God bless you Momma... my little has PMS as well... we got this... keep fighting...
She looks so happy. I hope they find a cure to help your little girl and so many like her.
my prayers for her,we don't lose hope, everything is in God hands.
this put alot of stress on the parents. life is not fair on the girl
She is so sweet ❤️ .
Omg...Stay strong momma...You are amazing!
She is so beautiful and such a fighter!!
I hope everything goes well
She is so beautiful and blessed ❤
Beautiful little girl ❤
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Do they not have implantable electrical stimulators for the bladder ? Just wondering as all of these are such time consuming tasks … even when done with such extreme luv n tenderness…All the very best…
What is her name with her hand on her chin
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have you tried c.b.d.s i have seen medical shows that people use c.b.d. my husband has parkinsons and he uses it. it really helps.
You've seen on TV this works. You did not just say that! Do you know how dangerous your advice can be or that you can be liable if someone follows your suggestions and it goes badly? NEVER do this
@@elliesouza717 yes ellie i have seen it work!!! not just on t.v. of course she should talk to her doctor first.sometimes you grasp at straws.i am not liable for anything it was a suggestion. i am not trying to hurt anyone.i pray for that baby every day.
❤Blessings to a beautiful baby & family. Also, research CBD OIL administered against seizures & join other families giving their babies this organic oil.
Don't ever recommend that people just randomly try things... Especially with a medically fragile child. I've been an ER nurse for 25 years and I can't tell you the number of children I've seen come in clinging to life because some parent decided to "research" and play doctor to devastating results, even though some ideas seemed harmless
Over 30 years of legal green Dr. & Severe & disable : SDC educated to include PT OT & SPEECH THERAPY…
mom looks like she's at the end of her rope. Hopefully the lord will take her home soon so she doesn't have to suffer any more
Did you seriously just hope for a child's death? I lost a four year old many years ago. I hated seeing her suffer, but if someone had said this to me...I think I would have been locked up. Don't ever talk to a grieving parent .. You clearly don't have the sensitivity or common sense
Please try medical marijuana it will help give her life back plus I don’t want her to die she will be so much more normal and she won’t suffer anymore please consider it please and then try Christiananity
That is almost always contraindicated in children. You can't say the affect it would have on you because you don't know her entire medical history and definitely aren't a doctor. You do realize if someone follows your directions and goes wrong... You are liable. Don't practice medicine without a license
Like pot would be the better of the seizure medicines rather than being so tired and drained plus it will help her sleep even CBD will. 😊
im reporting it child porn for a pervert
Are you seriously getting off on a little special needs kid having a seizure? Wtf is wrong with you.
@@CS-yn2wg who are you talking yo
@@zixea3318 The person who thinks this is porn.
What the hell is wrong with you?!!! We found the pervert