I have FOP too, and have met Ashley several times. She's amazing and a wonderful soul. This disease sucks but you've got to make the best of the life you're given. Her mom is incredible just like mine. Love you, Ash, hope to see you again soon!
@@Matrlipa Yes-that 's what they invented it for. Paul Alexander was amazing. I binge-watched videos of him a few years ago and learned that he was a lawyer. I was so glad that he was able to live his life to the extent that he did. 😊
The thing I find so sad is that the answer of everyone on this channel is always; "I'm just a human being". Which means many people, apparently, react negative on their appearance in the general public.
Not to mention the people that always want to offer "helpful" advice, as though your doctors know nothing. And then they'll caveat that the know someone who had something kinda like sorta what you have and they took vitamin A and cured it. Well meaning, but oh so unhelpful and demoralizing.
Yah I used to work with adults with varying special needs, people need to take a damn class in high school that introduced them to people that are different. The ignorant poor behavior from adults when we were out always floored me. I think this channel is great and I appreciate all they do!
She’s so empathetic to her mom, it’s beautiful really. She’s not even upset she lost her arm she’s appreciative that not having it makes it easier for her mom to dress her. She’s one amazing human, if only everyone could be so grateful for life and those around them the would would be a much better place
I’ve followed Ashley’s story for yikes 15 years? Since I learned about FOP. She was one of my inspirations to study genetics. I’m so glad to see her still going strong!
She's your *FULL-TIME MOM* ...I was blessed to be a *FULL-TIME MOM* when my eldest son became paralyzed and bedridden after he fell ill with bilateral pneumonia at age 31, fell comatose for a month on life support and awoke a month later - paralyzed from the chest down. I immediately quit my job ( I had retired 6 years prior and started a 2nd career with a community college) and became a *FULL-TIME MOM.* God allowed me twelve years with my beloved son, even after doctors told me to take my son off life support (they said he was brain dead) when he was in a coma...but I refused since we had just lost his father to cancer three months earlier. I miss my son tremendously...but I relish the 12 years of memories I was graced with in being a *FULL-TIME MOM* . ❤
God bless you. You’re one very beautiful soul for sure & your heart is so loving. I’ve lost so MANY loved ones including my mom & sister both only 4 weeks apart. My infant brother when I was only 8yrs old. Life is definitely challenging. I can honestly say love continues to grow more inside me, regardless of all the pain & tragedies I’ve endured. God reminds me he’s got me. I miss my mom beyond any words. She was my best friend too. Her daily hugs were everything to me. I know your son cherished EVERY SINGLE MOMENT he had with YOU without a doubt. Much love to you. 🙏❤️🙏 ♾️
Thank you for sharing your story with me. I am so happy that you were healthy enough to be that full time Mom your son needed. Beautiful memories. Fulfillment .
I'm bedridden from a different condition and not as limited. You made me more grateful. Thank you for sharing your story. I'll be your friend if you want.
I kept thinking, “wow, she sounds like she’s a great friend” especially when she was talking about being there emotionally for her friends & wanting them to feel comfortable telling her about their own struggles.
I do not intend to say anything seemingly negative because I love this channel and these people are absolutely wonderful. Regarding your comment she did say she is on Anti depressants, which makes a profound difference in attitude, every level and overall outlook. She says she would likely cry a lot more if she wasn't on them. I just don't want others thinking -what's wrong with me why can't I be more positive she's in a worse situation than me.- maybe if they were prescribed medication it could help them with that. Serotonin, dopamine and oxytocin are the key to happiness and all regulated by the brain, which sometimes needs a little help. I have a friend who was on anti depressants and had to stop taking them to get pregnant and have her baby, and her whole outlook on life changed. Her energy level was way down, she was overall sad and experienced more negative thoughts. So please no one get down on yourselves for not being as positive as her in your situation. 🤍
That part made me a bit sad. If the mother didn't say anything, then she would have thought they were old, and her reasoning for giving them a pass is valid. But because the mother maybe felt forced to make that joke, or was self conscious, she said "they weren't old, they were my age!". It's little things like this that cause a feeling of "disconnect" between people. They make it clear they appreciate each other, probably because they know they cannot communicate perfectly, as the disconnect is there. This also explains why she won't even talk to her for a couple of days when she is in a funk.
FOP affects only about 400 Americans a year! Median life expectancy is 56 years. I saw a new FDA (first one ever) was approved in 2023 for FOP. The drug, palovarotene, reduces ossification of connective and soft tissues. I was so happy to read about this since this condition is ultra-rare. What a beautiful soul ❤ ❤
Someone who struggles with a disease that slowly losing my sight. Hear your life story and how you still dealing with life. The positive attitude you have is such a fresh breath of air cause I feel the same way as you. Thank you so much sharing your story.
I remember first hearing about her on the show "Mystery Diagnosis". I'm sorry to see that she is bedridden now, but she still seems like such a strong and positive person.
Thank you, that's why she looked so familiair. All the time in this video I thought: I know a woman with FOP and she lost her arm also bc they thought it was cancer.
This is why I clicked on the video! I so vividly remember watching that Mystery Diagnosis episode when I was little. I'm so sad for her loss of mobility, but so happy to see her again and get an update on how she's doing. I'm also glad that she's fine with having lost that arm, because that mistake was so gut-wrenching.
What an amazing lady. I have a rare autoimmune disease Dermatomyositis. That disease causes me to have Dysautonomia. Which is my autonomic nervous system to go haywire. I can not cool myself off so in spring and summer I have to hibernate in my freezing cold room. I try to keep a positive attitude. I will not complain about my not being able to walk very well. My disease is a muscle and skin disease. At least I can walk and get to my many doctors appointments. So sad but glad she has lived way longer than the Doctors predicted!!! I am glad her family knows her worth! She is such a prize to this Earth! I wish she has many more years with her family.
I wonder if I have that...I cannot stand being in the sun/])heat. I've been checked for literally everything and nobody can figure it out. They were actually thinking I was pre menopause at... 20...!Apparently not, because I just had a surprise baby at 44😂 I always have the air conditioner on me and I have to be very careful to bundle my baby so she is comfy and warm (which means I'm uncomfortably hot most of the time!) People think I'm crazy walking around half dressed while picking up snow and rubbing it on my forehead 🙃
I've got dysautonomia (specifically POTS) but not the $$ to do tests to figure out whats causing it, but highly suspect autoimmune disease. i literally just had to turn on my A/C after having it off for only half an hour bc i felt like i was about to pass out 😅 wishing you good health days and that flare ups are few and far between for you, friend ❤
I loved that she casually mentioned that anti depressants have a very critical use during traumatic or difficult periods of our lives. I am so grateful for how lexapro helped me past some of the worst months of my life ❤❤❤
@@carriefawcett9990 not to mention the withdrawal symptoms can be disabling and even permanent for some people. For me, getting off antidepressants was the worst experience of my life... Never again.
This is just incredible, to have someone love you so deeply, and shes not even her real mother. Its unbelievable and shes so lucky to have such a wonderful person, so very lucky. Just wow
I remember watching Ashley on the show “Mystery Diagnosis” many years ago. It’s sad to see how FOP caused her to be bedridden, FOP is a such a horrible disease!
Amazing just amazing!! God bless her mommy for never turning her back on her and taking her as she was loving her and being there for her through thick n thin!!!! 😊❤ God bless her parents! We need more love like that in this world!! 💜
I wish there was a way to do a SBSK pen pal program. I guess you'd have to be mindful of weirdos (maybe screening by SBSK and then SBSK forwards?). I'd just love to tell these people they are loved and special and continue on the blessing.
I feel like it could work like those online bill pay systems. (Someone pays their bill online, a check gets issued and mailed on their behalf IRL to pay that bill.) a viewer could type out their letter, it gets reviewed and approved by SBSK (or an approved person), a physical letter is printed and mailed to the SBSK Friend!
I love this idea! There could be a place people could submit their po box or something if they wanna connect with people and anyone who's interested can write to them
Awwwww! Ashley is wonderful! She’s so sweet, and her beautiful mom is the very best! God’s blessings, Ashley. You have my prayers. Sending you so much love and light.
Ashley you are a true warrior I remember when you were up and walking on the show “inside edition” you are a strong woman. I’m so happy you’re well Ashley 🙏
What an amazing outlook despite her condition! She's the kind positive that lifts people up. I also love her fashion choices. Red glasses, plum lipstick and green suit - bold and beautiful.
I use to work at a day center and one of the people I helped had this condition. She was in a lay down wheelchair but had functions with her hands. She did live at a county hospital but we would pick her up every day to take her to the center. She had the same thought of life, and postive spirit.
I saw Ashley few years ago here in YT during one of their FOP meeting, I listened to her story and seeing her again today makes me glad. She can be bedridden but she has not lost her love for life. She's definitely a warrior! Ciao Ashley and mom from Florence, It.
Gosh I really love this lady! She has such a great energy about her. I was shocked to hear that she was adopted, because before I learnt that, I was thinking how much her and her mum look alike 😱 I wish them both many more years of getting on each others nerves and having laughs together. I miss laughing with my mum.
wow. this gives me hope i can have happy days again. i have chronic, hard to treat depression with 1.5 decades of therapy and many meds. Having a bad afternoon. This gives me hope.
I wanted to take a moment to express my heartfelt gratitude for your tireless advocacy for those of us living with FOP. Your courage, strength, and unwavering commitment to raising awareness about our rare condition have made a profound impact on our community. Your voice has not only educated others about FOP but has also given hope and inspiration to those of us facing the same challenges. Thank you for showing the world that our condition doesn't define us, and for fighting to improve the lives of everyone affected by FOP. Your dedication to advancing research and support for our community is truly admirable. Ashley, you are a beacon of light for the FOP community. Thank you for being an incredible advocate, role model, and source of inspiration for all of us. 🙏
Wow! What a beautifully written tribute. You’re obviously a very smart and articulate fellow. I hope you have as many supportive friends around you as Ashley seems to have. I pray that you will have the least amount of bone for the longest amount of time. 🙏 Much love to you from New Zealand. 🥝🇳🇿😎
She’s also an amazing advocate for broader conditions too. I have a condition called Klippel Feil (and I have a very severe version of it). As a kid, I never found someone with my condition to look up to, but I found her. KFS is a lot like FOP, except its not progressive. We are born with the fusions and skeletal abnormalities, and they stay that way, other than secondary progressive characteristics like arthritis and bone spurs that result from the abnormal joints. My relationship with my dad is a lot like hers, and my needs are similar, so she really made me feel less alone.
Ashley, you are one in a million!!! Your attitude is definitely what keeps you going and your parents are a large part of molding that attitude. You go girl!!
the individuals on this channel always remind me of how grateful I should be for what I have as despite their limitations they never seem to give up. thank you! 💕💪🏻
The humility and deep love that her mother harnesses are beyond commendable. She wins mother of the year every year. I wish everyone could be like her. ❤️
You are amazing.... God bless you. You have a beautiful skin loved ur makeup. You are beautiful...n love ur mom. U guys r a blessed team. I pray many ppl will be inspired by ur terrific attitude towards life.
Incredible story she is indeed a very positive lady. I thought she might be able to seat on a wheelchair and at least be wheeled around to see beautiful landscapes.
Just wanted to say hello to Ashley and her dear Mom. I think Ashley is so positive and upbeat. It’s interesting to hear about her life and how she lives with FOP. One of my dear friends was diagnosed with a progressive form of ALS. Ashley reminds me very much of my dear friend. How Ashley tells her friends it’s okay to be sad or upset over things that happen in their own lives. My friend wanted to hear about our days, how we were doing, what made us happy, what made us sad. It’s easy to see that Ashley is an amazing person and a precious friend to all lucky enough to be in her circle. Wishing her & Mom and their loved ones all the best!!!
I have the utmost admiration for parents/family members who are caregivers of people with special needs. The love they have to have to basically devote their life to take care of them. May God bless them greatly.
I tell you, good health is a gift, seeing stories like hers really puts things into perspective. If she can be happy and have a smile regardless then so can anyone else. Thank you, you are a gem. I'm praying for you.
Thank you Ashley for showing that a life in bed can be a good life! I wholeheartedly agree with that - I basically live in bed too and only get in my wheelchair 1-2 times a week, sometimes even less. Still, all in all life is good and I’m glad to be here.
holy shit this woman is so much stronger than most people who have ever existed
You're telling me! 💀💀
She's incredible ❤
No lies told😢
You took the words right out of my mouth. Godbless her and mom
Cause of her family being there for her with out them she and all of us in the same position will crash.
I have FOP too, and have met Ashley several times. She's amazing and a wonderful soul. This disease sucks but you've got to make the best of the life you're given. Her mom is incredible just like mine. Love you, Ash, hope to see you again soon!
🤟🏼🙏🏼❤️
❤
❤
bless you
❤ God Bless you both
Reminds me of the man with an iron lung. My heart goes out to her, makes you feel grateful for what you have.
I don't know if you know but he died a month or two ago. He was amazing.
The same thought came to me. Both of them, extraordinarily inspiring human beings, such positive and loving souls.
@@claudiarobinson587yea 😢
Yeah but he only got the iron lung cause of having polio
@@Matrlipa Yes-that 's what they invented it for.
Paul Alexander was amazing. I binge-watched videos of him a few years ago and learned that he was a lawyer. I was so glad that he was able to live his life to the extent that he did. 😊
What an incredible mother. You don’t have to be related by blood, to love someone so deeply. This lady has a great attitude.
The thing I find so sad is that the answer of everyone on this channel is always; "I'm just a human being". Which means many people, apparently, react negative on their appearance in the general public.
people with disabilities get stopped and asked/told the most ridiculous, rude things in public. it definitely feels dehumanizing.
And the fact that disabled people existing around people makes ableists rage, and they’ll say “You’re inconveniencing us” and “Just stay home”
Absolutely. She is a human being and nothing but.
Not to mention the people that always want to offer "helpful" advice, as though your doctors know nothing. And then they'll caveat that the know someone who had something kinda like sorta what you have and they took vitamin A and cured it. Well meaning, but oh so unhelpful and demoralizing.
Yah I used to work with adults with varying special needs, people need to take a damn class in high school that introduced them to people that are different. The ignorant poor behavior from adults when we were out always floored me. I think this channel is great and I appreciate all they do!
For a lot of my patients, “care partner” instead of “caregiver” feels more positive and emphasizes least restrictive care ❤
Never heard this term before, but I love it! Thank you for sharing ❤
Thanks!☺️
I like that, because it implies that you also care back, perhaps in a different way, but it signifies you’re in it together.
You two are absolutely amazing !
She said "obviously I'm adopted" right after I thought that they look so alike❤
had the same exact thoughts!
thats what i thought too!
same here… she looks just like her mama. beautiful ladies. 🩷
Thank you great interview. ❤ Much love
Yes, I agree she looks like her mother.....
She’s so empathetic to her mom, it’s beautiful really. She’s not even upset she lost her arm she’s appreciative that not having it makes it easier for her mom to dress her. She’s one amazing human, if only everyone could be so grateful for life and those around them the would would be a much better place
amen
Soulmates dont always have to be a romantic thing, these two were destined for each other.
What a lovely thing to say ❤
You can tell she’s very well taken care of and has a great support system. What a beautiful soul!!❤
Wow, her adoptive mother is literally an Angel. God bless her.
I believe that God puts people in our lives for a reason Ashley’s mother is her Guardian Angel 💖💖💖
Awww Im so glad to see Ashley again , even if she is bedridden now. Bless her.
What was the other vid with her in it called
@@amritheamriandshermanshow7777 It will be on here on his bio.
I would also like to see that video.
@@elainenicholls7648me to
@@amritheamriandshermanshow7777, she was on an episode of Mystery diagnosis
What an amazing woman. Her mother is amazing too.
This is humbling to say the least.
I’ve followed Ashley’s story for yikes 15 years? Since I learned about FOP. She was one of my inspirations to study genetics. I’m so glad to see her still going strong!
All the best wishes for your study, Alyssa!
Remember people, if you think your life sucks
Hats to this women for being brave living like this, she might be a stone but her heart isnt for sure
This woman is the definition of "look on the bright side". She's awesome!
It’s amazing what we’re capable of when given a seemingly impossible situation. She’s the definition of honest resilience.
She's your *FULL-TIME MOM* ...I was blessed to be a *FULL-TIME MOM* when my eldest son became paralyzed and bedridden after he fell ill with bilateral pneumonia at age 31, fell comatose for a month on life support and awoke a month later - paralyzed from the chest down. I immediately quit my job ( I had retired 6 years prior and started a 2nd career with a community college) and became a *FULL-TIME MOM.* God allowed me twelve years with my beloved son, even after doctors told me to take my son off life support (they said he was brain dead) when he was in a coma...but I refused since we had just lost his father to cancer three months earlier. I miss my son tremendously...but I relish the 12 years of memories I was graced with in being a *FULL-TIME MOM* . ❤
"full-time mom", I really like that phrase
God bless you. You’re one very beautiful soul for sure & your heart is so loving. I’ve lost so MANY loved ones including my mom & sister both only 4 weeks apart. My infant brother when I was only 8yrs old. Life is definitely challenging. I can honestly say love continues to grow more inside me, regardless of all the pain & tragedies I’ve endured. God reminds me he’s got me. I miss my mom beyond any words. She was my best friend too. Her daily hugs were everything to me. I know your son cherished EVERY SINGLE MOMENT he had with YOU without a doubt. Much love to you. 🙏❤️🙏 ♾️
Thank you for sharing your story with me. I am so happy that you were healthy enough to be that full time Mom your son needed. Beautiful memories. Fulfillment .
@@fmt_Guåhan thank you for sharing this.
Great phrase, why would your son becoming disabled be a blessing though?
She said "obviously I'm adopted" but when the mom first came on screen I thought they looked so much alike.
I agree! And Mom is also so beautiful❣️ 🥰
I thought the same thing. 😊
Why did she even have to mention that she was adopted? She is your mom, period!! Your biological mom was just an egg donor.
Me too. They definitely appear very similar.
Me, too!!😊
I'm bedridden from a different condition and not as limited. You made me more grateful. Thank you for sharing your story. I'll be your friend if you want.
Ashley is a wonderful lady. I would love to have her as a friend. I have never seen a bedridden person so full of life and so vibrant 😊
She's a great person. I'm so glad to call her a friend. She is like this off camera. So sweet and genuine.
I kept thinking, “wow, she sounds like she’s a great friend” especially when she was talking about being there emotionally for her friends & wanting them to feel comfortable telling her about their own struggles.
@@kevinkeener3216 thanks for the reply. I hope Ashley reads these comments and sees just how awesome everyone thinks she is 😊
I do not intend to say anything seemingly negative because I love this channel and these people are absolutely wonderful. Regarding your comment she did say she is on Anti depressants, which makes a profound difference in attitude, every level and overall outlook. She says she would likely cry a lot more if she wasn't on them. I just don't want others thinking -what's wrong with me why can't I be more positive she's in a worse situation than me.- maybe if they were prescribed medication it could help them with that. Serotonin, dopamine and oxytocin are the key to happiness and all regulated by the brain, which sometimes needs a little help.
I have a friend who was on anti depressants and had to stop taking them to get pregnant and have her baby, and her whole outlook on life changed. Her energy level was way down, she was overall sad and experienced more negative thoughts. So please no one get down on yourselves for not being as positive as her in your situation. 🤍
I salute your mom she is what every human should aspire to be. I wish you the best and strength. God bless you.
Ashley, the most positive person ever with a beautiful Mom. Love and hugs to you both.❤
♥️
What a precious lady. You are a hero. God be with you. 🙏🙏🙏🙏🙏
“They weren’t old they were my age” love it !!!! ❤❤❤ she’s blessed to have a mother with a great sense of humor and a nurturing heart ❤️
That part made me a bit sad.
If the mother didn't say anything, then she would have thought they were old, and her reasoning for giving them a pass is valid.
But because the mother maybe felt forced to make that joke, or was self conscious, she said "they weren't old, they were my age!".
It's little things like this that cause a feeling of "disconnect" between people. They make it clear they appreciate each other, probably because they know they cannot communicate perfectly, as the disconnect is there.
This also explains why she won't even talk to her for a couple of days when she is in a funk.
@@roachdoggjr45
oh for gosh sakes lighten up.. Ashley does.
Carrying resentment and negativity makes you old fast😮
Amen❤
She literally just gave me insight on how much I should be happy. I love this lady. Id love to meet her. Beautiful soul
"She's been my number one human my entire life."-Ashley "I like that"-mom. I like that too...what a beatuiful relationship they have!!
FOP is so brutal, and cruel. This woman's indomitable spirit through it all is truly admirable and inspiring.
I’m in bed pouting like a child over the end of a bad relationship and you’re remaining a smiling bad ass! You are amazing.
Your pain is also valid, friend. I hope that peace and comfort find you in this time ❤
It’s ok for you to be sad. You can’t help how you feel . I hope you feel better soon .
Right? Great reminder of perspective
I feel that! I bet it takes a lot of time and resilience to get to where she is now
Emotional pain is a horrible weight to carry. You have to grieve, it's part of the healing process.
What an amazing woman ❤ And her mom is the sweetest ❤
FOP affects only about 400 Americans a year! Median life expectancy is 56 years. I saw a new FDA (first one ever) was approved in 2023 for FOP. The drug, palovarotene, reduces ossification of connective and soft tissues. I was so happy to read about this since this condition is ultra-rare.
What a beautiful soul ❤ ❤
I bet it's unfortunately very expensive and not covered by Medicare and Medicaid for sure.
Can they undo the fusion once it happens or is it irreversible once it does happen?
@@Tattedlady60 Probably not covered 😔
@@WildWombats Unfortunately, it’s preventative only.
@@WildWombatsit's irreversible, once it's bone it's bone.
Miss Ashley is the definition of the phrase
An attitude of Gratitude ❤ Simply Beautiful
Someone who struggles with a disease that slowly losing my sight. Hear your life story and how you still dealing with life. The positive attitude you have is such a fresh breath of air cause I feel the same way as you. Thank you so much sharing your story.
♥️
@@RogueWave2030
You will be thanking and praising God soon 🙏🙏🙏🙏
@@carolsaylor6151 Why would someone thank and praise a ‘god’ that causes a disease that leads to blindness?
❤
What an amazing woman. Her mum is also an angel. Takes a special person to be a full time carer
wow just wow. her attitude and gratitude for life is so inspiring 🥰
I remember first hearing about her on the show "Mystery Diagnosis". I'm sorry to see that she is bedridden now, but she still seems like such a strong and positive person.
Thank you, that's why she looked so familiair. All the time in this video I thought: I know a woman with FOP and she lost her arm also bc they thought it was cancer.
I remember that episode
This is why I clicked on the video! I so vividly remember watching that Mystery Diagnosis episode when I was little. I'm so sad for her loss of mobility, but so happy to see her again and get an update on how she's doing. I'm also glad that she's fine with having lost that arm, because that mistake was so gut-wrenching.
i shouldn't be surprised that there are so many of us sbsk viewers that also watched mystery diagnosis!!
@@FgursMy fave show as a child for some reason 😂
Ashley, her Mom, and Chris are unbelievable people. ❤️
That Mom is a true Hero!
Ashley is too.
I'm adopted too. Adoptive parents are literal angels on this earth. I love you mom!
Attitude is everything - what a great attitude this woman has, we could all learn from her. Beautiful ❤
Isn't that the truth !
She’s got a wonderful role model in her lovely mum.
This lady is a true hero!!!! Love her mom too❤
What a special momma and a special lady.
What a beautiful and courageous woman! Thank you for sharing your story Ashley. Count your blessings everyday!
Blown away by this lady's courage, resilience and personality. Plus the strong love between her and her lovely mum.
What a woman! What a mother! Inspirational in their courage, love and levity. Big love to them.
What an amazing lady. I have a rare autoimmune disease Dermatomyositis. That disease causes me to have Dysautonomia. Which is my autonomic nervous system to go haywire. I can not cool myself off so in spring and summer I have to hibernate in my freezing cold room. I try to keep a positive attitude. I will not complain about my not being able to walk very well. My disease is a muscle and skin disease. At least I can walk and get to my many doctors appointments. So sad but glad she has lived way longer than the Doctors predicted!!! I am glad her family knows her worth! She is such a prize to this Earth! I wish she has many more years with her family.
You said it all
I wonder if I have that...I cannot stand being in the sun/])heat. I've been checked for literally everything and nobody can figure it out. They were actually thinking I was pre menopause at... 20...!Apparently not, because I just had a surprise baby at 44😂
I always have the air conditioner on me and I have to be very careful to bundle my baby so she is comfy and warm (which means I'm uncomfortably hot most of the time!) People think I'm crazy walking around half dressed while picking up snow and rubbing it on my forehead 🙃
I've got dysautonomia (specifically POTS) but not the $$ to do tests to figure out whats causing it, but highly suspect autoimmune disease.
i literally just had to turn on my A/C after having it off for only half an hour bc i felt like i was about to pass out 😅
wishing you good health days and that flare ups are few and far between for you, friend ❤
@@KuraiKaNinja It's awful that medical costs are too high for many people to get the help they need.
Blessings to you.
Sending off all of my prayers and Love to this remarkable Lady 🤍❤🙏
I loved that she casually mentioned that anti depressants have a very critical use during traumatic or difficult periods of our lives. I am so grateful for how lexapro helped me past some of the worst months of my life ❤❤❤
Lexapro did absolutely nothing for me.
@@carriefawcett9990 It's different for everyone, just because it doesn't work for you doesn't mean it can't work well for others
@@carriefawcett9990 not to mention the withdrawal symptoms can be disabling and even permanent for some people.
For me, getting off antidepressants was the worst experience of my life... Never again.
Lexapro is a psyop
This is just incredible, to have someone love you so deeply, and shes not even her real mother. Its unbelievable and shes so lucky to have such a wonderful person, so very lucky. Just wow
I’ve been following Ashley’s story for ten years. Thanks for sharing and keeping us up to date on her!
I remember watching Ashley on the show “Mystery Diagnosis” many years ago. It’s sad to see how FOP caused her to be bedridden, FOP is a such a horrible disease!
@@a.j.marcantonio153that’s where I found her too!!
Amazing just amazing!! God bless her mommy for never turning her back on her and taking her as she was loving her and being there for her through thick n thin!!!! 😊❤ God bless her parents! We need more love like that in this world!! 💜
She should write a book. I want to be her friend.
Me too!
Me too! 😊
Me too!!❤
Same here
Spot on❤
one of the most inspirational things I've ever seen, god bless this woman and her beautiful caring mom
I wish there was a way to do a SBSK pen pal program. I guess you'd have to be mindful of weirdos (maybe screening by SBSK and then SBSK forwards?). I'd just love to tell these people they are loved and special and continue on the blessing.
I feel like it could work like those online bill pay systems. (Someone pays their bill online, a check gets issued and mailed on their behalf IRL to pay that bill.) a viewer could type out their letter, it gets reviewed and approved by SBSK (or an approved person), a physical letter is printed and mailed to the SBSK Friend!
@@SabrlIna I would love to be a part of that. These special people have helped me through my own problems!
I love this idea! There could be a place people could submit their po box or something if they wanna connect with people and anyone who's interested can write to them
She's on Instagram
shes an adult you can just contact her
beutiful people. you mom is an angel! and you are awesome.
Awwwww! Ashley is wonderful! She’s so sweet, and her beautiful mom is the very best! God’s blessings, Ashley. You have my prayers. Sending you so much love and light.
Ashley you are a true warrior I remember when you were up and walking on the show “inside edition” you are a strong woman. I’m so happy you’re well Ashley 🙏
One brave lady living her best life. Wonderful to see xx
Truly
This women is beyond inspirational
What an amazing outlook despite her condition! She's the kind positive that lifts people up. I also love her fashion choices. Red glasses, plum lipstick and green suit - bold and beautiful.
You two women are amazing.. Thank you,for sharing. God Bless You's.
I've met one person with FOP before in my career as a doctor, extremely rare. I feel so sorry for this woman but she has strength!
What a beutiful soul. Amazing human.
What an amazing human being she is. Glad she decided to be interviewed.
I use to work at a day center and one of the people I helped had this condition. She was in a lay down wheelchair but had functions with her hands. She did live at a county hospital but we would pick her up every day to take her to the center. She had the same thought of life, and postive spirit.
What an amazing love between mother and child ❤
Hi Ashley! Thanks for sharing your inspiring story! Love you and your spirit!
Those are two strong women. 💪🏻 I am so impressed with their honesty, courage and determination. Positive thoughts and best wishes to them both.
Ashley you and mom are an amazing and inspirational people! God bless you!
I saw Ashley few years ago here in YT during one of their FOP meeting, I listened to her story and seeing her again today makes me glad. She can be bedridden but she has not lost her love for life. She's definitely a warrior! Ciao Ashley and mom from Florence, It.
Gosh I really love this lady! She has such a great energy about her. I was shocked to hear that she was adopted, because before I learnt that, I was thinking how much her and her mum look alike 😱 I wish them both many more years of getting on each others nerves and having laughs together. I miss laughing with my mum.
You're in my thoughts and in my prayers. Thank you for your strength and courage.
wow. this gives me hope i can have happy days again. i have chronic, hard to treat depression with 1.5 decades of therapy and many meds. Having a bad afternoon. This gives me hope.
Wishing you strength. 💕
Don't make comparisons. Your illness is also hard to deal with and is your own trial.
She snd her mother both are wonderful ❤️
I wanted to take a moment to express my heartfelt gratitude for your tireless advocacy for those of us living with FOP. Your courage, strength, and unwavering commitment to raising awareness about our rare condition have made a profound impact on our community.
Your voice has not only educated others about FOP but has also given hope and inspiration to those of us facing the same challenges.
Thank you for showing the world that our condition doesn't define us, and for fighting to improve the lives of everyone affected by FOP. Your dedication to advancing research and support for our community is truly admirable.
Ashley, you are a beacon of light for the FOP community. Thank you for being an incredible advocate, role model, and source of inspiration for all of us. 🙏
❤🤟🏼🙏🏼
Wow! What a beautifully written tribute. You’re obviously a very smart and articulate fellow. I hope you have as many supportive friends around you as Ashley seems to have.
I pray that you will have the least amount of bone for the longest amount of time. 🙏
Much love to you from New Zealand.
🥝🇳🇿😎
She’s also an amazing advocate for broader conditions too. I have a condition called Klippel Feil (and I have a very severe version of it). As a kid, I never found someone with my condition to look up to, but I found her. KFS is a lot like FOP, except its not progressive. We are born with the fusions and skeletal abnormalities, and they stay that way, other than secondary progressive characteristics like arthritis and bone spurs that result from the abnormal joints. My relationship with my dad is a lot like hers, and my needs are similar, so she really made me feel less alone.
Ashley, you are one in a million!!! Your attitude is definitely what keeps you going and your parents are a large part of molding that attitude. You go girl!!
the individuals on this channel always remind me of how grateful I should be for what I have as despite their limitations they never seem to give up. thank you! 💕💪🏻
Yes absolutely! I have limitations but nothing in the world like Ashley's!
@@RogueWave2030❤🙏
💯❤️😊
Wow. Amazing lady and so is her Mom. Even more amazing is seeing Gods preparation for her to live out her life. Thanks for sharing. 💕
The humility and deep love that her mother harnesses are beyond commendable. She wins mother of the year every year. I wish everyone could be like her. ❤️
She's so positive and sweet! And i absolutely love the relationship between her and her mom!! What a blessing!
Love her! She is an inspiration! As well as her mom!!🙌
True
You are amazing.... God bless you. You have a beautiful skin loved ur makeup. You are beautiful...n love ur mom. U guys r a blessed team. I pray many ppl will be inspired by ur terrific attitude towards life.
"I can't live in your invisible plastic bubble." Profoundly true on so many levels. ❤
What an incredible and resilient woman. Sending Ashley and Tickles an abundance of love ❤️
She is full of love ❤❤ positive vibe despite the difficulties god bless her awesome soul ❤
What an amazing mom she has!
Ashley is warm and positive.i have seen her on youtube and no matter what is going on she keeps going and always looks to the future
Incredible story she is indeed a very positive lady. I thought she might be able to seat on a wheelchair and at least be wheeled around to see beautiful landscapes.
Wonderful to meet Ashley, what a superb example of a human being. An inspiration.
You're not only a human being, you're a decent and strong one. ❤ 💪
Just wanted to say hello to Ashley and her dear Mom. I think Ashley is so positive and upbeat. It’s interesting to hear about her life and how she lives with FOP. One of my dear friends was diagnosed with a progressive form of ALS. Ashley reminds me very much of my dear friend. How Ashley tells her friends it’s okay to be sad or upset over things that happen in their own lives. My friend wanted to hear about our days, how we were doing, what made us happy, what made us sad. It’s easy to see that Ashley is an amazing person and a precious friend to all lucky enough to be in her circle. Wishing her & Mom and their loved ones all the best!!!
She is a delightful woman….. way more positive than most people.
I absolutely LOVE her spirit!! We can all learn a thing or two from this sweet and brave woman 💯🙏💕👌
She’s a beautiful person & her mother is lovely.
I have the utmost admiration for parents/family members who are caregivers of people with special needs. The love they have to have to basically devote their life to take care of them. May God bless them greatly.
Great episode! ❤ God bless.
God bless you precious! Will be praying for you and your family.
Wow..., you have An amazing personality. ..I wish you all the strength, joy, and love you need. Thank you for sharing your life. 🥰
Ashley, you have the outlook on life that everyone should have. Thanks for sharing your story with us.
I tell you, good health is a gift, seeing stories like hers really puts things into perspective. If she can be happy and have a smile regardless then so can anyone else. Thank you, you are a gem. I'm praying for you.
Thank you Ashley for showing that a life in bed can be a good life! I wholeheartedly agree with that - I basically live in bed too and only get in my wheelchair 1-2 times a week, sometimes even less. Still, all in all life is good and I’m glad to be here.
My god how much a lot of us can learn from this beautiful soul, she exudes positivity and a unique prospective