Ava's Make-A-Wish Story | Tay-Sachs Disease
Vložit
- čas přidán 23. 06. 2022
- Ava's Make-A-Wish journey started at one year old. We started noticing something wasn't right with her vision. Shortly after she was diagnosed with Tay-Sachs (a rare fatal genetic disease). This film documents Ava's life, diagnosis and her Make-A-Wish story.
In Loving Memory
Ava Rose
5/16/17 -11/21/21
AvasStory.org
Credits:
Director - Dan Redfield (www.danredfield.com/)
Starring - Ava, Reagan, Kristen Redfield
Original Score - Steven Cornfield (cornfieldstudio.com/)
Color Grade - Rich Cooper, Rowan Pickard (frostlinestudios.com/)
Sound Mix - Derek Haukaas
Still Photography - Narrow Road Productions (www.nrpalaska.com/)
Made Possible by - Make-A-Wish, Great Alaskan Holidays
I cried all the way through. I first came across Tay Sachs disease in 1971 in the UK when I was 17 and a cadet nurse. The ward sster allowed me to care for this little boy on my own because I had a very ill sister who was often on the ward. I had left to do my nurse training in the British army when he died but my mum let me know. A few years later I found my vocation working in learning disability and I absolutely loved it but never saw anyone with Tay Sachs again until my grandson was born with epilepsy and cerebral palsy and a little boy at the hospice had it. Sadly my grandson died in 2010 aged 9 but I had the privilege to care fo him for most of his life. I am so glad that you were able to take Ava out in the mountains and to give her all the experiences possible, we did that with my grandson Joe so we have so many memories. God bless your family and all the special needs children you are helping in Ava's name.xxxx
I pray for the parents. 😢
As parents you did an amazing job. He gave her to the right parents, who cherished loved and miss her. What a wonderful keepsake. Love out of tragedy. She knew what was happening and that she was loved. God bless you all.
That is so kind of you to say. Those are two things that comfort us, she knew she was loved and we did everything we could. Thank you for watching!
Such children come to clear a very big heavy part of the family tree karma. So that the family history would not come to an end.
They deserve a lot of love and honor for their sacrifice.
Family Constellations can help find out some ugly hidden family secrets if smn wants to find out.
They say unspeakable secrets will always surface one day and smn from the descendents will repeat the story or pay for it .
Who wants to find out has many options available.Enough doing a little research.
And most important : asking all still available ancestors about important events that happened in the family and about untold secrets.
God bless.
They certainly did a superb job . Wonderful people
They are definitely called to her, God new only certain people are special enough for one of His more perfect children.
Ikmm
Ava’s face with her sister nearby was just so lit up. What a beautiful last summer you had.
Priceless! Thank you, one we'll always remember.
I wish there was wishes for adults with a chronic disease. I would love to explore and see nature but I’m 58 years old and my husband is my caregiver who is retired and getting old at 66 years.
The memories are amazing, Ava being outside so much she got to feel the wind on her face ,smell the ocean, hear the crackling woodfire and listen to all her family around her .
Thank you so much for those words. Looking back we feel so much pride knowing we did everything to give her what she deserved. ❤
Dear sweet Ava
May her memory be a blessing ❤
Such a beautiful little girl & beautiful family. God Bless
Thank you so much! We miss her dearly.
I am in awe of your love and strength. You have conquered the ability to give dignity to a child totally dependent on you for everything. ❤
May her little soul rest in peace😢😢😢
Ava lighting up when Reagan cried really got to me. Imagine the bond between them. Reagan will always feel her presence in her life, not as a child with a disease, but as the whole healthy soul she has become. Blessing to this courageous and loving family❤❤
In a few years we’ll show Reagan this film for the first time. I can’t wait for that day ❤️. Thank you for watching
So heart touching, ❤️ 💙 💜 💖 💗 💘 rip sweetheart!
Thank you for watching. We miss her dearly.
I am in tears. I have autistic children. What an amazing pair of parents and family! Ava was/is loved and that is the most wonderful gift and life you could ever give to her.
Wishing the very best for you all.
Im crying...fly high sweet angel
My cousin died from it. I saw my aunt love her and care for her. It was your love and care that your daughter used to live these years. She had a beautiful life. God bless.
What an inspiring video, we can clearly see the love for this precious little girl! You did an amazing job as parents! Even through this horrible disease, Ava lived her life with joy, courage and dignity! May this story continue to be inspiring for many ❤
Beautiful story. Strong parents
Thank you for watching and your kind words ❤️
Sweet little Ava, fly high and always watch over your Mommy and Daddy and your baby sister. R.I.P. little angel
This is an inspiring video. Thank God everyday for your healthy children and pray for those that have a child with illnesses ❤😊
Ava Rose had a life well lived. Beautiful soul, her face is forever turned towards the sun ☀️
I think helping to take care of my MIL in the late stages of Parkinson's has helped me read the tiny expressions better than some. Her parents obviously saw those moments of joy, twinkle and relaxation but they were my absolute favorite parts of the video ❤She was loved and at peace during her short time here
Ava was born to be an angel she just had to go through this rough patch first.
Thank you for sharing Ava's story with us. Rest in peace little Angel
Thank you for watching her story ❤️
Thank you for sharing your beautiful story. May Ava's memory be a blessing....💗It' great that you started an organization in Ava's memory to help other families.
Thank you! We already have 2 exciting adventures planned for this summer for some very deserving families. Their films will be posted later this year.
A story of a precious little girl and her beautiful family. Play in God's paradise, sweet Ava ❤
Beautiful video! 💕 I lost a brother to Tay-Sachs long before i was born, but was raised knowing him and he was always included in the sibling count.
This had me up late into the night in *tears* & *thanful* for such an *inspiring* story about a beautiful *angel* girl.💝
Ava was so strong and brave bless her heart, rip sweetheart, no more pain or suffering, you are free now precious little girl. Love and hugs to your family x
Creating as many memories for families is very important I suffer from Muscular Distrophy. What an inspiration and a wonderful family.
Both your children ..how very precious 😊❤❤❤
I've never smiled so big and cried so hard at the same time like this. ❤️🩹
What a beautiful young lady Ava you could see her smile and love in her eyes and the connection with her sister thank you for shareing Ava life with us sleep tight little Ava❤
This was mind blowing, what parents go through. The family adored her, her life was filled with love. You could see how much she loved them all. What an amazing watch filled my heart ❤️ with love x
My grandmother, who just passed in November at 97, always asked me about tay-sachs any time i was in a relationship. I was adopted and my background is Scottish, irish, etc. My family , we are jewish, so my grandparents parents were from russia, poland etc. She would say " Samantha, but what about tay- sachs" i would remind her i am not Jewish by decent. It also wasnt until 8 yrs ago i wss actually pregnant. She felt better knowing about the genetic testing. My grandmother's maiden name ( and my uncles and cousins) was Sach! I always wondered if there was a story i wasnt told.
What a beautiful little girl ! What a beautiful life ! May God bless and keep you all !
Ava had the BEST smile 😊
So beautiful! Thank you for sharing your journey with us all. What a joy to watch.
What a Beautiful Little Girl ❤
She could light up the darkest of rooms with her Beautiful Smile 😍
What, loving, kind, caring parents you are😊
Both your little girls are blessed to have you both as their Mummy & Daddy and you are both blessed to have two Beautiful Daughters xxx
Reagan, will have the best memories of her big sister xx
Spread your Angel Wings Ava and fly high over the Rainbow 🌈 to the place of your choice, play, run & have fun with all the other Beautiful Angels, that they too grew their Angels wings too soon xxxxx
My heart just broke😢❤
Bless her, oh my goodness is this a tough one for me to watch! Just WOW…my heart, oh how it hurts 😢
Now… I have to say, when the sun hit Ava’s face, I don’t think there is a more beautiful child…you can see the love she feels in her smiles, the brightness in whole being…she is just the most beautiful little angel! How lucky to have given birth to this amazing precious child 🙏
What a beautiful and inspiring story. May your family cherish your precious memories forever.
34:56 When Reagan gave Ava a kiss… I broke into tears, what a moment you captured ❤❤❤❤❤
I went through the same thing when I was young I had brain cancer when I was two years old and I wasn't supposed to survive but I'm still here today and I will be 21 in June god bless ❤
When Ava smiles when she hears her sister, I smile through tears. The love that little one has for her. 🩷
What a beautiful child with her soulful and intelligent features. Our daughter died of Holoprosencephaly and she had this wisdom in her eyes, too.
You did a great job giving Ava a great Make-A-Wish. I remember camping with my family and your other daughter will have these memories to look back on for the rest of her life.
Awesome parents. Precious babies.
Thank you for sharing your amazing love story. 💝
Just so mesmerized by your beautiful family, Ava’s sweet soul, Reagans loving nature. So loved and cared for and certainly you knew it. I was so emotional watching this, I’ve wanted to work with special needs children, but was diagnosed with my own rare illness. I’ve learned a lot through it and just how you think your life will go a certain way and then life happens and you end up somewhere completely different. Truly a journey and lessons learned. Thanks for putting this out there and for all that you do. Much love to your family. 🤍🌼🤍
Beautiful story, family, and so many amazing memories. Angel Ava❤️
This is a beautiful story and was ment to be shared ava was so special she is a angel thankyou for sharing you both gave ava so munch love and compassion stay strong thankyou so much for sharing thease prescious moments are so beautiful and will live on for many years
😢 RIP Ava, you were a very brave angel
god seeing her little sister giving her kisses...reagan will certainly be a wonderful kind and gentle woman. i bet you she might even be a doctor because of her sister Ava. I just love this family...it makes me sad but i love them.
They use the vest for cf patient too. She so adorable
This was a wonderful and inspiring show for all parents of handicapped and just children
My friend had two girls then a son. Her son had krabbe's disease and lived to 8 months old, neither one knew they were carriers. He'd be in his early 40s, any parent never forgets any child they've had. I remember reading about Tay Sachs and the caring doctor holding these babies and young children, all Ava knew was love❤
God bless Ava 🙏🏻
Beautiful story Thank you for sharing Eva in peace now angel for God watching over her love ones. It was awesome how you showed Eva nature and she loved it. She love the sun on her roses cheeks The memories you made for your family are so endearing. ❤❤❤ RIP dear sweet angel Eva❤
I’m so happy that you had Ava in your life. But I’m sorry for your loss. The most difficult part of life is losing a child. But Ava brought your family together and that’s a good thing ❤
May God’s grace and mercy continue to be with you! Sorry for the loss of your beloved daughter!
the fact that make-a-wish got them a super nice camper makes me so happy. it really is perfect for them!!! Ava had all that she needed 😭❤️ rest in peace sweet baby
R.I.P. beautiful little angel 💔
A totally beautiful story. You are amazing people!
Amazing family. Beautiful legacy!
Im praying for your family
Ms Ava Rose is now running and skipping on the Streets Of Gold That Are Located In Heaven And By God’s Grace She Will Be With Her Family Again And I Just Want To Say That I Can See How She Knew Who Daddy and Mama and Little Sister Because It Was Written All Over Her Face The Light In Her Eyes And The Glow And Those Sweet Tiny Smiles And I Pray That God Gives You Peace And Joy And You Will Find Him As Your Savior ❤heart ❤
What a brave and beautiful little girl Ava was. And you were the best family she could have hoped for. Trusting she is now in Jesus' Rest. May the Lord bless you all every day. ❤
Aww this was a heartfelt story and I'm so happy that Ava's family took the time to share their adventures with us . Ava I know you are finally free to play in heaven with all the other little angels , free from all restraints and pain. God Bless your family for loving you with so much love.Even your little sister enjoys watching the memories of you being out at parks with a beautiful smile . So sorry for your lose and yous did your best to make sure Ava was a happy little girl. RIP Ava ,God needed you in heaven and now you are looking down on your family with that smile and laugh of yours. 😇😇😇😇😇😇💓💓💓💓💓💓
🎉what a beautiful beautiful little girl 🎉
Thank you. We miss her so much.
Thankyou for sharing your amazing story! What a awsome family !
You are an amazing family.❤
Ava,was such a beautiful child And she definitely hit the family lottery when she was born to you and your husband. I'm so sorry that this horrible disease took your baby girl. But she was so loved. And I'm so glad that you have so many beautiful memories& photos with her. You gave her the best life imaginable. God bless you all
What wonderful parents. I can't imagine the pain and what they have been through. May God bless them and may they be united with Ava in heaven. Healed and whole.
what a beautiful little girl I have pws which effects my mental health and daily life I can’t vomit and I am constantly hungry it’s know as the hungry person syndrome or praderwilly syndrome low muscle tone gets tired quickly and all sorts of issues not very many people have it it’s a genetic issue pws happens in every 15000births you need constant care because of my low development it’s know to not talk till you are about 6 and have a speech and language therapist and very common spin problems when I was little I was very sensory I watched very young things because my brain had not developed enough in parts you have to have growth hormone which helps you grow and improve muscle muscles I am currently trying to lose as much wait as possible I am very fit I do karate horse riding football basketball baseball cricket volleyball cooking tennis love tech especially playing Pokemon and watching anime I am already taller then my mum I am 15 now 16 this year hoping to get a job that most people can’t get with pws
I am currently studying photography and drama science maths English I am a 5 kyu purple and white belt in karate been doing horse riding for 3 years now hoping to start gymnastics soon love going on the trampoline I am also doing something in the uk called Duke of Edinburgh there are 3 parts bronze silver gold if you do all of them you get to meet the duchess not sure what a man is called
when people like me are born with pws you have stay in the hospital I spent most of my first year in hospital testing because it’s so rare it shows kinda a bit of time after birth slightly you don’t cry a lot food or water transfers through a tube that I always used to pick out and my mum would have to call a doctor the first then she could manage it must have been a nightmare for my mum and dad
you have to see a a few specialist hight and weight spin experts food experts family helpers the doctors are all lovely my original help that helped me just left the clinic she would always chat to me and do my check ups and keep me entertained they also have to check how much fat you have rip to her beautiful soul and I hope your heart e eventually gets better god bless you and may god look after your daughter in heaven and wrap his and your daughters arms around you thank you for sharing your lovely family
God gave you 2 beautiful girls ❤ Thank you so very much for sharing and being the best mom & dad to Ava. I know it was hard, but like you said, you’d do anything for your kids. Bless you all…❤
You took her to amazing places, you are so lucky to share moments with family, I would be so scared one of her machine breaks down.
Alaska is beautiful. My brother and his wife live there.
Beautiful story. Thank you. God bless you and your family. ❤
Blessings ❤
Bless you Francie ❤
Thank you so much for sharing your story. ❤ loved every minute of it
Superbe film
You were the best parents gave her absolutely everything and more ❤ Rip ava rose.
No parent deserves to put their child to the grave.. its so damn wrong..
Loving what is, this life of Ava is precious.
Knowing what this sweet baby went through and that she would not have the chance to grow up I could not have gotten pregnant again, that 25% chance of this happening again... is a chance I wouldn't have taken.
Did they even know what was going on with Ava by the time of the second pregnancy? I'm not sure!
❤❤❤
♥️♥️♥️
Beautiful video. Thank you for sharing it.
God definitely knew you were the right parents! ❤
A family in our church lost 3 children to Tay Sachs. They later went on to raise other children that needed a home
10 seconds in I was like WTF?! You knew and still went ahead?! .....but I'm better now 😅 Beautiful baby given a beautiful life
Yes she did
We've been ultra campers for years & finally did our first Alaska trip in 2023!!! Absolutely wonderful choice for you & the girls!!! I'm a retired Navy Medical Laboratory Technician & learned all about Tay-Sachs Disease during lab school & while working at Bethesda Naval Hospital in the Laboratory!!! My heart goes out to your family!!! Blessed are all his creatures, both great and small!!!
I do know for 100% that AVA will RIP………With all what she was able to see in her short Life‼️🙏🏾🙏🏾‼️
❤😢❤😢❤😢❤.
I hope you don’t mind if I ask what kind of seat you have Ava sitting in outside capping. It looks like a blow up one.
God please help doctors find a cure, please. These families need you so bad.
I think you 2 are great. I also believe in God. I believe we are given challenges
in life to make us stronge ,and they come in different size, shapes and kinds of
packages. I've had my fair share. You wouldn't want mine and I don't know if I
could handle ours. You by far was given a Beautiful challenge with some
challenges of her own. But you guys were heros . God trusted you and you did
great. The smile on Ava's face and the baby's. I think mybe they understood
each other, which helped Ava and you guys. I hope you 2 and sister know you
were and are Blessed. I Believe you will see her again, I am taught that in my
Religion and I know it to be true. The Church of Jesus Christ of Latter Saints.
Just know you are Strong
I get it.. this was make a wish for the family.
I found out on 23 & me that i am a carrier of this disease
That green stuff is an infection in her Gallbladder, my mother had it I had to drain it three times a day.
its only so rare because people at risk often avoid conception of an affected baby.
You can't know you're at risk unless you get genetic testing. The chances of two carriers finding each other and having children is slim. It's rare because it is statistically unlikely. Stop spewing bullshit.