Avenly: A Story of Extreme Hyptonia (Phelan-McDermid syndrome)

Подписаться 428

Просмотров 47 тыс.

50% 1

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

Опубликовано:

1 окт 2024

Ссылка:

Скачать:

Готовим ссылку...

Добавить в:

Мой плейлист

Посмотреть позже

Комментарии : 40

@CharGC123 Год назад

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.

@mohammadforouzan1984 Год назад

🌹🌹🤗🤗

@bill-bergen Год назад

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?

@redlady222 Год назад

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 ❤

@crystaldixon6986 Год назад

Avenly is so blessed by the best family. ❤️

@carolannmiller7911 Год назад

💞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!

@ThanhPham-pn6is Год назад

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.

@jimchiro3459 Год назад

my prayers for her,we don't lose hope, everything is in God hands.

@jennykonrath6011 Год назад

This poor kid😢 Hang in there mom! Hugs

@kittysysagal1209 Год назад

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. 🌹💝🌹💝

@Tantemify Год назад

this put alot of stress on the parents. life is not fair on the girl

@lalakids907 Год назад

She is so sweet ❤️ .

@LauraSegura-yv9wt Год назад

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 !

@ahshacarter8174 Год назад

God bless you Momma... my little has PMS as well... we got this... keep fighting...

@furbabiesarefamilytoo Год назад

She looks so happy. I hope they find a cure to help your little girl and so many like her.

@evelinagleisner930 Год назад

I hope everything goes well

@me-pb3gi Год назад

Omg...Stay strong momma...You are amazing! She is so beautiful and such a fighter!!

@punkrockgalbenevenelse3659 Год назад

Beautiful little girl ❤

@nanciebrown4533 Год назад

She is so beautiful and blessed ❤

@meagain6008 Год назад

🌈♥️♥️♥️

@biancaholler5170 Год назад

❤❤❤❤❤

@johnhipp604 Год назад

What is her name with her hand on her chin

@gitaamini2683 Год назад

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…

@jamiegallier2106 Год назад

❤

@vegandolls Год назад

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

@elliesouza717 Год назад

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

@ritatunning4428 Год назад

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

@elliesouza717 Год назад

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

@ritatunning4428 7 месяцев назад

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. 😊

@kellyruddock8822 Год назад

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.

@elliesouza717 Год назад

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

@kellyruddock8822 Год назад

@@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.

@noemifitzpatrick6039 Год назад

❤Blessings to a beautiful baby & family. Also, research CBD OIL administered against seizures & join other families giving their babies this organic oil.

@elliesouza717 Год назад

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

@noemifitzpatrick6039 Год назад

Over 30 years of legal green Dr. & Severe & disable : SDC educated to include PT OT & SPEECH THERAPY…