@@YaeGalvus 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. 😊
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!
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 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 .
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 ❤ ❤
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.
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. 🤍
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 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 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.
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 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.
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.
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.
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 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!
Yep! Age is no excuse. My mom's great-aunt fostered a bunch of kids with disabilities for a time in the 1960s or 70s when her own children were grown. I remember my mom telling me how fiercely my great-aunt looked after and loved those kids. I also remember my mom telling me how when my mom was a kid, in the 70s I think, my grandma worked in one of the facilities they had back then for disabled children that some of those parents back then washed their hands of. Mom told me how attached she got to them. I think that work was extremely emotionally difficult, and she didn't do it for more than a couple of years at most. My grandma also raised a daughter with cerebral palsy, who lived independently in an inter-abled relationship as an adult before dying too young of cancer, and didn't blink an eye at me, her blind granddaughter. A far cry from my paternal grandmother who was definitely more distant and reserved. Anyway, my maternal grandma was born in the late 1920s and my great-aunt sometime in the 1900s or early 1910s I think. All I am getting at here is that there's absolutely no reason, not even age, to be an ignorant, ableist bigot.
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.
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.
I have to admit that as someone with chronic illness I have had nightmares about not being able to move. It's really amazing to see that she is able to live a full life surrounded by people who love her and support her, even if things aren't perfect.
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.
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! 💕💪🏻
I do not know where the human tenacity comes from to live a life like this and many others that we've seen on this channel. I'm constantly blown aaway.
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. ❤️
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 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.
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
YOU inspire me. I’ve endured “9” close family member deaths within these 6 yrs. Including my mom & sister both exactly 4 weeks apart to the date. Seeing the bond you have with your mom, reminds me of the EXTREMELY CLOSE bond I had with my mom. She was my best friend. We gave each other a hug EVERY SINGLE NIGHT before bed. Even me being a grown adult. We continued the hugs every night. I would give anything to feel her hug again. 😢😢😢 Continue to stay positive & cherish every single moment with your mom. We all seem to have something the other doesn’t have. We’re all blessed as you said, we just have to remind ourselves of the blessings & try hard not to focus on what we don’t have. YOU seriously touched my heart tonight. Thank you SO MUCH. You’re more than human, you’re BEAUTIFUL beyond this earth & your HEART and encouragement is BIGGER than this life. God bless you & MUCH love to you and your amazing gorgeous Mom. 🙏❤️🙏🥹♾️ 🤗 Hugs.
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!!!
ashley, if you’re reading this i love your glasses, lipstick and cane, i can tell you’re creative and have a great sense of style! everything is carefully chosen, coordinates and shows your personality! thank you for sharing some of your life with us, you seem like a joy to be around. i have MDD so it’s like a constant fistfight in my brain to try and be positive about anything, my brain chemistry simply hates me, but i’ll think of your happiness and strength next time im really struggling to embrace life and accept things. one of the bad things about this channel is seeing people i would love to be friends with irl haha, but glad i could at least meet you this way :-) hope you have a great day :-) thanks also to ashley’s mom, you seem so kind and i hope you have a great day too! ❤💜💚
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.
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!!
Medical prognosis regarding how long a child or a teenager or an adult will live should not be given. Nobody has a crystal ball, not even doctors. It so much denies one's potential as an individual. Every single day one's potential challenges a medical prognosis. Ashley, you and your mother are amazing and it was an honor to learn about your story. Your love for life and living surely has made a huge difference. Your resilience, your strength, your positive spirit... you have convinced your body to keep going no matter what. You are truly inspiring, the way you think, the way you relate to life inside and around you. You make us all appreciate life just like you do because you have this strength and this optimism. Thank you!
I’ve heard of people being told they have six months to live and they lived many years longer. It takes away a person chance of being positive and I agree it’s wrong.
@@debbieschultz9768 Absolutely, Debbie! Nobody has the right to predict someone's fate in life. Nobody has the right to determine if someone will be able or not able to do something. It is a total sabotage/denial of someone 's potential.
On the other hand, some people may want to know an average or estimate, even though nobody can predict for sure. People have the right to know whatever information they want to about their condition.
