Тёмный

#RootingforRhett 

Ashley Schow
Подписаться 367
Просмотров 100 тыс.
50% 1

#RootingforRhett #angelmansyndrome #angelman
Bella and Ben Duce share the story of their incredible journey with baby Rhett and his Angelman Syndrome diagnosis. Word of mouth played a key role in helping them along their way. Please consider a like and a share to help Bella and Ben in their efforts to spread awareness of this rare genetic disorder.
For more information on Angelman Syndrome visit: cureangelman.org/

Опубликовано:

 

14 фев 2021

Поделиться:

Ссылка:

Скачать:

Готовим ссылку...

Добавить в:

Мой плейлист
Посмотреть позже
Комментарии : 112   
@lindacastillo4429
@lindacastillo4429 Год назад
May God wrap his loving arms around this family.
@strawberryjones7193
@strawberryjones7193 Год назад
very touching, what a wonderful pair of people... this child was born to the right parents.
@nancycurtis488
@nancycurtis488 Год назад
What a bright, beautiful smile…..so precious. You are doing a fantastic job, Mommy and Daddy!
@whoswhoatthezoo9372
@whoswhoatthezoo9372 Год назад
What a beautiful little boy, he’s really a little star ⭐️ bless your family 🙏
@user-kn4kx4mw4t
@user-kn4kx4mw4t Год назад
Such a sweet little boy.god truly gave you a angel.stay strong
@raebro8893
@raebro8893 Год назад
I have had the privilege of teaching three angels with angelman syndrome in Calgary .. beautiful young people. Rhett is lucky to have parents like you!! ❤❤❤
@pervisgavin1730
@pervisgavin1730 Год назад
Canada sucks
@maryjodillingham7783
@maryjodillingham7783 Год назад
God definitely picked the right parents for Rhett. He is a lucky boy and you both are lucky to have him in return! You have got this!!
@inmaculadahidalgoflores1257
He is an angel,and they are special,god bless that beautiful family
@sallyire1
@sallyire1 Год назад
Such a beautiful family. My heart broke hearing the mom talking. As a speech therapist I've had only one child who was diagnosed with Angelman's Syndrome. She was a girl of three with a single mom. I'll never forget the mom because she was completely exhausted. This poor child would rarely sleep. The little girl was mobile and had a crib. The mom said she never stopped moving, going in continuous circles in the crib as though she were doing laps. I think about that mom even now (20 years later) and wonder how they're doing.
@AngelBluff
@AngelBluff Год назад
I'm without words. SO many things i saw is this couple and their attitude i will never forget. Lessons taught in such a deep profound way. God bless precious Rhett and his story. What and amazing story of hope and love.
@bobbimitchell6226
@bobbimitchell6226 Год назад
Wow this brings back memories. My daughter was originally diagnosed with Angelmans syndrome. She had a lot of the symptoms your son has. We went through the mind blowing screams and lack of sleep and flapping of arms etc. turned out she has cerebral palsy with a seizure disorder and non verbal. She was not missing the chromosome. I really feel for you both and funnily enough we are from Calgary as well. Remember to take each day at a time.❤
@cecilialofgren1396
@cecilialofgren1396 Год назад
He’s a BEAUTIFUL little boy! You are a beautiful family, God bless you all!
@purpleandred7
@purpleandred7 Год назад
You have a beautiful family. God bless you all. I'm Rooting For Rhett 💜🙏
@5Heth
@5Heth Год назад
What a Beautiful Story about a Beautiful Family. Bella & Ben told Rhett's story in a way that really showed the emotional roller coaster they've been through & the love they have for their family. Just beautiful.
@wandamacmillan3514
@wandamacmillan3514 Год назад
❤❤❤❤❤❤
@joannedevine2473
@joannedevine2473 Год назад
I just want to share with you. They said the same and worse about my sister with Downs Syndrome. Don’t let the Dr’s limits become your own. One day at a time.❤
@LLjean-qz7sb
@LLjean-qz7sb Год назад
God gives the right child to the right parents! He knows what is best. God Bless all of you and may God give you the strength and patience to parent Rhett!( you already have the love!)
@DianeCiccaroni
@DianeCiccaroni Год назад
He is absolutely adorable and LOVABLE 🙂👍🙂✨🧡🌄🌠✨🌛
@DianeDixey
@DianeDixey Год назад
You two are so brave... and so loving.
@happypinke
@happypinke Год назад
Beautiful young family. May God bless you all N heal your son..prayers!!
@dianaspy6733
@dianaspy6733 Год назад
So glad you found support in your journey! Bliss to you!
@LAURA-ll4ig
@LAURA-ll4ig Год назад
God chose a very special mommy and daddy for a very special boy! Such a sweet soul who, as you mentioned, will never try to hurt another. The world could learn a lot from him. God Bless you both and your precious boys. 🙏
@judithbaker184
@judithbaker184 Год назад
😅no
@MegaBossmare
@MegaBossmare Год назад
God is a made up fantasy
@lindacarruthers3423
@lindacarruthers3423 Год назад
I have enormous respect for this couple and to use a commonly used phrase “ my heart goes out to them” it truly does . I felt it as I continued the video . As a parent whose child was frequently hospitalized my husband and I saw the many single mothers with sick children whose fathers were unable to cope with it all and left . There are so many aspects involved. Grief for the perilous future of the child you love with all your being , fear of dying before they do ,sorrow and sympathy for the pain and hardship you can do nothing to alleviate and so on . Then there’s your spousal relationship , changed forever to accommodate the little one’s needs . Becoming partners in advocacy for your child, sharing care and fears and still managing to love each other. Out sweet good girl achieved 26 years and devastated us by dying one night with no warning . Fortunately we believe she is better off now in a place of love in which she can flourish as she was not able to in this life .I will say a prayer for you all , and tell you that you are magnificent even if you don’t necessarily feel it , YOU ARE ! ❤❤❤.
@laurapeltier1913
@laurapeltier1913 Год назад
This young man was so beautiful and smiley and I loved it that he was interacting with other kids in the junior high. It was the right thing to do for this young man.
@deefitzgerald2906
@deefitzgerald2906 Год назад
What 2 BEAUTIFUL BOYS…..I know what it’s like having a Child in My Family that’s Not PERFECT but PERFECT for Us… His Name Is ZEVEN and now is 30yrs Old and Thanks to My BEAUTIFUL SISTER is WHY We still have him…. ZEVEN has less than a 2 yr olds mind and My Sister has to do EVERYTHING for Him and Yes her Husband helps also We are so Blessed to still have him and his Parents are getting older but He dose have a Sister who loves him so Much and can take care of him also…These children are Gifts to Families and should be treated with nothing less…
@annj7466
@annj7466 Год назад
I love your beautiful family. ❤ I am so proud of you. Thank you for sharing your story.
@user-sl6cg4qc3y
@user-sl6cg4qc3y Год назад
God gave this Precious little boy to you very special parents. He is in the best hands possible. May God bless you and your family today and always! 💕
@mandyholmberg5106
@mandyholmberg5106 День назад
I am sending out my thoughts and prayers and love to this whole family ❤
@emzzan88
@emzzan88 Год назад
what a beautiful family and that boy is so cute
@phyllispeart175
@phyllispeart175 Год назад
God bless Rhett you and husband.
@sandrahallcrowe4657
@sandrahallcrowe4657 Год назад
Your words and story is so similar to our life. As a mother of 3 boys, with different issues, our past 42 years with our youngest had many of the issues your does. Your heartfelt shared thoughts of hopes and dream ring so true. My sons disorder has cross over traits with developmental challenges, struggles, behaviours, seizures, feeding issues, love but 42 years ago, not the family support nor DNA info but constant trips to doctors, specialist, hospital stays, tests….worry, stress, and making a uncharted future for him. Never gave up but forged forward out of love for him like yourself. Others did not understand. Our life is unique. His joy is our joy. Our world is better as he’s in it. It gave us direction and strength. We are better people, more patient than we would of. We try always to see life through his eyes and yes, it’s hard work. There was no Google for us then in 1980 but we did questions and never gave up. He is unforgettable to all who met him, us not but he has made a mark on this earth, teaches others what a living pure angel walking amongst others. I will keep your story with us. Thank you for sharing yours. There is light at the end of the tunnel. We live differently but love the same.
@mezanian
@mezanian Год назад
How many of us took for granted our children born and raised trouble free. Until I met this family I had no idea. Are they perfect?, ..yes, for Rhett they are. I'm so happy to know they will all be fine 🙂 😘🇦🇺
@debbiegeorge5718
@debbiegeorge5718 Год назад
Incredible story. As a young couple and having your first child ill is devastating. My daughter was ill alot but we were fortunate that she eventually outgrew the illness. But I remember crying holding her we loved her so much . We didn't know anything about babies as she was our first so everything we did likec all first time parents it was a guess and hope that it was right. I feel your pain but your an incredible couple I believe the love you have for each other will and has benefited your Beautiful baby boy. Many couples can't handle the stress and break up. As long as you continue to hold the love and respect for each other he will grow up happy and isn't that all we really want. Good luck to you both. I dont have a doubt in my mind that God gave you this child for a reason and this little angle may have an illness but he's perfect for you both. 😊
@laurapeltier1913
@laurapeltier1913 Год назад
He is such a beautiful boy.
@lindab8397
@lindab8397 Год назад
Rhett is so lucky to have you both as parents. But your life is so hard 😢. I hope and wish you get plenty of help, because you both and your other child need some normality. Bless you both and ,any god give you the strength to carry on ❤
@janetrouse8362
@janetrouse8362 Год назад
I am so deeply sorry & your comment about Rhett will never have bad intentions toward anyone made me think that he is an angel sent from Heaven for some reason to you parents. Lord have Mercy on your family.
@AmFMv1968
@AmFMv1968 Год назад
Brought tears and smiles to me, sending you all love and prayers. Kia Kaha! 💜💜
@bridgetmonica31
@bridgetmonica31 Год назад
Rhett is a very handsome little lad.
@darlenesheldon2246
@darlenesheldon2246 Год назад
Bless your family. I worked as a aide to care for a set of twin boys with Angelmens. They were 20 years old. One of them had come home from the hospital after a seizure episode. This young man never spoke.. BUT this day I spent the day with him rubbing his head and talking to him and just being there with him. He looked up at me and said "Love you!!!" I couldn't believe it. They are happy young men..
@pamelawages7927
@pamelawages7927 Год назад
May God bless you as you love your beautiful son!
@GS-no5qz
@GS-no5qz Год назад
Blessings
@lizcunningham291
@lizcunningham291 Год назад
Thank you for saharing your story, what a beautiful family, i wanted to say as a craniosacral therapist one of my first profound moments in my training was working with a boy with Angleman syndrome and he taught me so much about non verbal communication that it has helped hundreds of my clients since, every human being has a something to say, if we are willing to slow down and listen deeply ❤
@sophiabright8371
@sophiabright8371 Год назад
I was honored to provide organization support for a mom whose beautiful son was born with Angelman syndrome. It was a huge learning experience for me. I have moved away and haven't visited them for a while... Missing the feeling of profound love & compassion I witnessed. That young man's parents personify service and respect.
@barbvillarreal7440
@barbvillarreal7440 Год назад
Your beautiful Angel Rhett and his darling little brother are precious little gifts from God in Heaven 💙 💙 🙏
@sandralarson-gonzales3797
@sandralarson-gonzales3797 Год назад
God bless you all
@elizabethcolombo3388
@elizabethcolombo3388 Год назад
Rhett surely loves n enjoys his brother. It's so obvious watching his face n reaching out. A handsome little man for sure. Keep nourishing yourself physically and mentally n for your husband as well. Rhett is doing great. I love how you stated his intentions will always be pure. He will bring you n family untold moments of joy n love. God bless you all. Especially you Rhett.
@ginnymiller9093
@ginnymiller9093 Год назад
Heartbreaking but so thought provoking. I have never heard of this j condition and find the strength that these parents have and their willingness to reach out to other parents for info and then pass that on to the less informed is absolutely incredible. You are truly the parents that Rhett was meant to have. May God continue to keep you all wrapped in his love and strength. God bless you, the physicians caring for Rhett and your community of supporters. My prayers and love goes out to all of you.
@terrilewis172
@terrilewis172 Год назад
This was such a kind way to share with others by these wonderful parents that they may help other children.
@sandramorrow2583
@sandramorrow2583 Год назад
You are wonderful people your children are a credit to you both x
@rebeccamiller3012
@rebeccamiller3012 Год назад
Sending prayers for strength and comfort and healing on his lil body. May God help, lead and direct in decisions tonbe made in his lil life.❤❤
@loripowell5088
@loripowell5088 Год назад
I understand what you went through. I can't write it all here. I just want you to know I remember how hard it was to be so tired and frustrated. To have a baby that has a condition which is not diagnosed correctly or in a timely manner. I often thought well maybe I'm crazy. But you know in your gut something is wrong. I could go on and on but just want to stress to you how well you spoke of your and your husband's experience. You both obviously love your child dearly. I'm sorry you have had to go through all the pain of it. Please give yourself credit for your guys strength.
@hazelsignstrimble3064
@hazelsignstrimble3064 Год назад
God bless you all for your precious little boy
@user-uy8tn4ov2s
@user-uy8tn4ov2s Год назад
Thank you for sharing! You can see and feel the love you have for each other and your boys! Praying for your little ones and also for you and your continued strength. God bless your family!
@pervisgavin1730
@pervisgavin1730 Год назад
Did you know that every time you fart, it's a little piece of your soul escaping your body? Have fun in stinky hell :)
@virginiasantillan2267
@virginiasantillan2267 Год назад
I Pray Dear Lord To Heal This Child And That These Parents Have All The Support They Will Need And That You Fill Their Hearts With Joy And Peace And Again Healing For Rhett And All Children Afflicted And I Praise You Lord Jesus In Jesus Name Amen 🙏
@catharinasimms4588
@catharinasimms4588 9 дней назад
Such a beautiful family ❤ & gorgeous children ❤🇦🇺
@chrishough692
@chrishough692 Год назад
God bless your family! Prayers for Rhett, you as his parents, and his baby brother, who hopefully doesn’t have the same diagnosis. Rhett is well loved and happy, and that’s a huge blessing! ❤️
@lynnparrish1335
@lynnparrish1335 Год назад
Bless this family! I’ll tell you this: if the Internet existed 40 years ago when I was having children, I probably would not! I had amniocentesis at age 36 when I had my third child and the doctor thought I was nuts. He said I was not at risk for having a Down’s syndrome baby but I knew I would not have proceeded with the pregnancy (not judging those who decide to go forward; I knew that I would not). All of my children were perfect but I’m just in awe of parents who go through the many genetic issues out there. I could not do it. Grandchildren are all here, perfect, and thankfully my kids are done with their families. We’re so lucky! I am just in awe of 😅the parents who go through what these lovely people handle so gracefully.
@dixietenbroeck8717
@dixietenbroeck8717 Год назад
Down's Syndrome _IS NOT_ exclusive to "older" mothers. I've heard of mothers as young as 18 years old giving birth to babies with Down's, and have personally known a mother who was 28 when her 1st child was born - with Down's Syndrome. I'm SO GLAD that you "listen to your own counsel," as way too many people DON'T do that, then live with regret forever afterwards. (Hugs) from Northern California, from a mother of 3 healthy middle-aged "children," but one who, sadly, has NO grandbabies to worry about. (Frankly, I'm not sure I'd have the chutzpah to worry about grandkids, but my DH would have been THE VERY BEST Grandfather, EVER! For him only, I feel sadness.)
@jennyl.5730
@jennyl.5730 Год назад
I pray that no young couple have to go throw this journey with a new born but God only chooses the humans strong enough to handle these babies. If nothing else please get sleep when you can. Love to your family. 💕💝💐
@joanmckinnon2368
@joanmckinnon2368 Год назад
What a beautiful little boy God bless your family
@a.edgington4361
@a.edgington4361 Год назад
God bless you and your family the lord is there with you all.God Bess.
@allisonlew4508
@allisonlew4508 Год назад
I am so very sorry that this happened in your family.
@dennisriley4907
@dennisriley4907 Год назад
Bless you.
@lisajohnson7827
@lisajohnson7827 Год назад
Enjoyed your story and you will be an inspiration to many. Our 21 year son was first dx with Prader-Willi Syndrome and finally at 20 months dx with Angelman Syndrome. Hang in there....the sleeping will improve. You have a beautiful family! I really think our son Max has made us better people. Hugs!❤
@d.t.9367
@d.t.9367 Год назад
God bless your family.
@sharonrobinett4688
@sharonrobinett4688 Год назад
You have probably seen Its our wonderful life blog. Emily has 6 children One of her twin boys has Anglemans syndrome. That's where I learned about it. Great family!
@susangrusendorf4950
@susangrusendorf4950 Год назад
My great nephew has Angelman Syndrom. They are in Okotoks. His parents are the best.
@karenherring8883
@karenherring8883 Год назад
Worked for Disability Services QUEENSLAND and supported 3 individuals with Angelina's.
@jimmynewman7560
@jimmynewman7560 Год назад
First of all, you all have a beautiful family. Secondly, God gave you this little man because, He trusts you with him. I'm writing this from California. I can tell you this, that if you raise this child diagnosed with Angelman Syndrome, you're definitely amazing and troopers. Even people who haven't experienced AS personally in their families have no clue, including the ones making comments here. You two are definitely not alone. My younger brother has four children. He has his oldest so with Asperger's (doing well in the military), a second son with Angelman's, a little girl (who was stillborn-in heaven), a fourth son who also has Angelman Syndrome. It has been tough all these years on my brother, his ex-wife, who is the mother of these four children, and my parents. My parents are extremely instrumental in the raising of the youngest boy as they've basically raised him, themselves, as well as raising and caring for my older sister, who is also developmentally disabled and has never left home. My parents are amazing and deserve everything for their unrelenting efforts and dedication to raise their daughter and my nephew. We help when we can, but they do it all for sure. The Dr's told my brother and his ex, that "they have a 50% chance of each child having Angelman's if they choose to keep having children." My brother and his then wife had the still born little girl, my niece and she became pregnant a fourth time before specialists told her that the second little boy had AS. It seemed like no Dr. could figure it out, exactly. So, this is why they have two with AS. It is possible that their little girl could also have had AS as well, but we'll never know. So, back then in the 90's, I guess it was said, that out of every 500,000 babies born, there is one born with AS and my brother and his ex wife had two. Love you and God bless.
@elizabethkoobs1060
@elizabethkoobs1060 Год назад
Thank you for sharing this. I'm a career RN, recently retired, who specialized in the NICU. I had never heard of Angelman's. May God bless your family as they care for your nephews.❤️🙏
@suzanne00drcfdsidorick76
@suzanne00drcfdsidorick76 Год назад
A
@SEJ3333
@SEJ3333 Год назад
Lovely people and I wish them so well. P.S. She looks so much like Taylir Swift!
@connieverbeck1110
@connieverbeck1110 Год назад
God bless you!
@pervisgavin1730
@pervisgavin1730 Год назад
Queef 🤤
@debbielulham2768
@debbielulham2768 Год назад
Sending ❤ and prayers
@dottieboger2656
@dottieboger2656 Год назад
Blessings to your family. You are wonderful parents. 🙏🏻🙏🏻🙏🏻
@jasmith9630
@jasmith9630 Год назад
You two are so loving with each other and with your son. Good luck in the future. I am so sorry this happened to you and made your life so difficult. Sweet little boys.
@wandareed3061
@wandareed3061 Год назад
What a story!!!!
@travelwithradi9124
@travelwithradi9124 Год назад
This is really great
@kathyropa6174
@kathyropa6174 Год назад
❤🙏🏻
@laurapeltier1913
@laurapeltier1913 Год назад
I was employed by a junior high years ago and there was a young man there with angelman syndrome
@brendadamron581
@brendadamron581 Год назад
🙏🏻
@denicelent4250
@denicelent4250 Год назад
All 3 of my brothers have children with Angelmans. They are the happiest kids and areAngels Lent to us
@pegs1659
@pegs1659 Год назад
Do the doctors say its congenital?
@melaniebrignell
@melaniebrignell Год назад
Attentive parents 🙏
@jacquehoosier6597
@jacquehoosier6597 Год назад
❤❤❤
@BellBarker
@BellBarker Год назад
One day at a time. And if that's too much, one minute at a time.
@jaimewilson4091
@jaimewilson4091 Год назад
Get him a touch talker. Most AS are very intelligent.
@mastergardener2000
@mastergardener2000 Год назад
Have anyone ever thought marijuana therapy for the seizures? I did hear that there was some research about this. My prayers are with you❤
@christinagaudernack9012
@christinagaudernack9012 Год назад
@constancekeil1723
@constancekeil1723 Год назад
No closed captioned ?
@sandracollins7938
@sandracollins7938 Год назад
Never heard of this, is it genetic? I see you have another baby, a boy or girl? May God bless your family.❤
@suseyq4559
@suseyq4559 Год назад
It is a genetic condition related to a chromosome.
@emorel48
@emorel48 Год назад
I wish you would turn the Guitar off!
@beckykent6674
@beckykent6674 Год назад
I don't know why God dies this kids! Makes them suffer! I have a nephew who is very handicapped, can't talk or eat. So sad!! Good luck to you wonderful people!
@pegs1659
@pegs1659 Год назад
God didn't do this. If things were perfect we'd be in heaven.
@tmaffeo
@tmaffeo Год назад
Omg how can you say that ????
@kathgraham9209
@kathgraham9209 Год назад
...........😪
@chupaflor6331
@chupaflor6331 Год назад
They should take equal turns talking back and forth. Husband just sits there for long stretches. And yes , the guitar is distracting
@cynthiaamitrano8915
@cynthiaamitrano8915 Год назад
This may be harsh, but I can’t believe even first time parents could be so oblivious to their child’s suffering. I’m astonished.
@bg9509
@bg9509 Год назад
Oh my….irritating background sound…couldn’t watch the program.
@icturner23
@icturner23 Год назад
Anyone who feeds themselves or a child cows’ milk or any other animal product is highly irresponsible.
@nancycurtis488
@nancycurtis488 Год назад
Why would you say such a thing? I have seven children…the first two were bottle fed a cow milk formula and did great. I learned about breastfeeding and all 5 of my daughters were breastfed for between 2 and 4 years but also had cow milk from a Curt starting at age 2…. no problems what so ever…..ever. None of them have ANY food allergies…..milk and food allergies DO NOT RUN in our families so you really need to walk in other parent’s shoes before you make snotty comments when you are first of all not medically trained and second don’t know everyone’s story. In other words…..quit being a know it all meanie! Geeze.
@nancycurtis488
@nancycurtis488 Год назад
From a “cup”…lol…not a Curt.
@shannonrn7609
@shannonrn7609 Год назад
Oh my gosh, I just saw this, and it was so touching. I'm sure you have heard a lot of inspiring comments and have helped other mommy's and daddy's throughout your journey. I just wanted to say thank you. I've been a nurse for thirty years and have not had knowledge of or experience with this disease. God bless your family through this journey, and remember we don't know His plan or reason's but he made sure this young one had the best parents for the job. Prayers for strength, endurance, and faith. God bless you all🥲❤️‍🩹🙏
@jakobiepatrick9069
@jakobiepatrick9069 Год назад
When I got Asperger's too, I stayed at altapointe for 2 weeks and every night I got throwed up in my 🛁🚿 bathroom and since that I got no symptoms inside 💠 my stomach. and "everytime that you see is food" like my mom Mekita Ann said if she said that in that dictionary she will lose me before surgery back in 2022 right before the holidays and the new year as well and back in January of 2023 my old LG Stylo 6 was mess up and not work and couldn't charge well, you may now this, that's a lot of money, but thanks to Kelvin this weekend he got my money and Uncle Steve got me a new phone from Cricket® Wireless, it's called the Cricket® Ovation 2 and back this weekend in April I got a new phone charger the same charger as my new phone, Cricket® Ovation 2.
@pervisgavin1730
@pervisgavin1730 Год назад
lol
Далее
A Story about Angelman Syndrome
9:19
Просмотров 174 тыс.
British mum's discovery of her son's Angelman Syndrome
6:51
Your bathroom needs this
00:58
Просмотров 17 млн
My baby Damian, BEFORE the diagnosis
12:52
Просмотров 155 тыс.
Telling Amy’s Story | Full documentary
56:49
Просмотров 2,7 млн
THE FULL STORY OF GRIFFIN'S ANGELMAN SYNDROME JOURNEY
24:28
Fletcher Layne's Story
23:22
Просмотров 685 тыс.