The Little Girl Who’s ‘Turning To Stone’ Inspires Others With Her Incredible Story | This Morning
On December 5th 2013, Nicky Muller gave birth to her gorgeous healthy daughter Isla. But, after noticing an issue with her toes, Nicky searched for answers, only to be shrugged off by GPs and hospital doctors. But after seeing a specialist, Isla was given the devastating diagnosis of Fibrodysplasia Ossificans Progressiva (FOP) - a condition that only affects 70 people in the UK and sees ligaments and muscles turn to bone. Determined to not let the crippling condition stop her, 9-year-old Isla has continuously raised money for various charities. Ahead of world FOP Awareness day on Sunday, Isla and mum Nicky join us to raise awareness of the condition and update us on Isla’s latest fundraising plans.
Broadcast on 18/04/2023
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I was confused why doctors thought she had postpartum depression. Docs need to say every morning in the mirror "I don't know everything." It's ok to be human. And this amazing girl is beautiful!
This mother is amazing. So inspiring to see how much work she’s put into doing everything possible best for her daughter. ❤
@@electrodynamicorb6548 lovely comment NOT
@@clairebeech8585 a short lifetime of increasing pain is really nice to pass to your child.
@@electrodynamicorb6548 I still don't get your comment the mother didn't pass this on to her child it's a very rare illness so what r u talking about
My best friend had this. She died at 26. Fly high Stephanie. I miss you!
I’m so sorry for your loss
I'm so tired of doctors who blame the mother for having post natal depression when mothers know something is wrong with their child. It happens far too much.
Your not wrong there. I have ADHD, Autism and something else they haven't been able to diagnose as well as other issues. . Now, 25 years old, when I was younger, like preschool age, they told Mum similar, and ignored her, she had to go multiple time to the doctors before she got answers and was taken seriously. If it wasn't for her amazing determination, I probably wouldn't be here today. 😊
I was dismissed for 2 years with skin cancer symptoms. Dr's don't like when a patient knows what's wrong with themselves and a lot of them will do anything to make sure you're not right
@@laughingtiger101010 to be fair, I have a friend who knew her daughter was sick but she was born with a rare cancer. Some cancers aren't easily detected. It took 8 years to get a diagnosis of her cancer. My friend never blamed the doctors because once the diagnosis was made, she could see why it wasn't easily detected. It shared symptoms with other diseases that are more easily detected. She was humble enough to recognize that the doctors only knew so much and they were trying. Knowing something is wrong doesnt automatically mean the diagnosis is easy. Thankfully in remission and has mostly resumed a normal life as a young adult. Its not that doctors dont want their patient knowing whats wrong. Its medical science isn't perfect. Its ongoing studies that wont end. I know of a retired heart surgeon who helped pioneer the heart and lung machine used today. He is an expert on the heart and some of the best heart surgeons were trained by him. He talks a lot about his early days as a surgeon and how even in the 50s. Doctors still didn't know as much about the heart as they do today, but they knew a lot for its time. We are talking over a 60 year span of time. He also talks about how not all doctors are competent. But you acknowledge the ones who are. Most doctors are honest. Its society who thinks having no diagnosis automatically makes them a bad doctor. Which is not right. There is an MD who has brain cancer on instagram and she doesn't go around saying how medicine is bad because she wont be cured. She still practices medicine today with her brain cancer.
Far too many doctors are in the wrong career in my opinion.
What a wonderful mother!!! Strong, effective, supportive
The little girl is pensive and sweet. Such a nice presence about her. Bless her little heart.
I had a patient with this disease years ago and ill never forget it. Such an awful disease affecting the sweetest people
What an amazing story of such a strong and brave little angel and her wonderful mother.
I'm so sad I learned my toe and I was I want a doctor said I'm not person gets surgery if I get started my name tell she's asking to pay for to get a show you my love tell I almost you should have surgery on her she's on on the Hershey Hershey take pain Bible pay $50 is Michelle Asbury I pray for you and your family pray for you and family God bless you God bless you and your family and your daughter this Michelle is BMI Michelle lisenby I feel God is always there for you answer prayers 🙏
Angels surrounding this amazing child , may God Bless her…
I can relate to this mom. No, my son wasn't diagnosed with FOP. But when my son was born he lost weight before leaving the hospital. Born at 9lb 6ozs. Left the hospital at 8lbs 13ozs. When he was born, you would have thought he was of indian descent because his skin was very, very red. Left the hospital and his color started to change and he started looking very frail. He had only gained 1 oz in his first 6 weeks. I called several times telling the dr that there was something wrong with him. At his 6 wks checkup, I was told nothing was wrong. They noted at how well he held his head up. "Sick babies wouldn't have such muscle control", I was told. But the dr said "to appease you will run some blood tests". That night, I received a phone call to get my son to the ER. From the local ER he was then taken to Pittsburgh's Children's Hospital where he was for the next 2 weeks. He was then diagnosed with a very rare disorder called PHA or psuedohypoaldosteronism. At the time, he had only been the second baby diagnosed with it. Listen to your instincts!! I was told had I not pushed for it, he wouldn't have lasted much longer. He is now a healthy 22 yr old.
Bless this beautiful brave little girl! … mum, what an advocate you are, so knowledgeable and eloquent ♥️
Bless this beautiful child. It is truly inspiring to hear of her determination to live as ordinary life as possible and to do good for others.....and what wonderful and loving parents....I pray that they find the strength to cope and to always be there for their precious daughter.
what a brave little girl telling mummy we need to live normally . amazing❤😢
Thank you dad for being so strong , and sticking around , my childreen father are healthy and he left , you are the father and man i want my son to be
This amazing little girl is here to TEACH us something. Doctors, pay attention!!!
What a pretty girl. She deserves to healed. 🙏🙏🙏
Stories like this put your own problems into perspective.
What a lovely young girl.
God bless this precious little girl and family
Lovely beautiful little girl born to two amazing lovely parents. You're amazing!!❤
❤️❤️Although my story is different my daughter was born with severe club feet with no heels, she had her first operations at 3 months and 8 more before she was four, she wore various plasters from her hips to the tips of her toes, she had constant hospital stays and general anaesthetics every fortnight for plaster changes to accommodate her growth, then had callipers for 3 years. When you have a child you will do anything for them to live a normal life it’s unconditional. My daughter went on to learn jazz, tap and character dancing and earned all the relevant medals till she turned 16. I wish nothing but happiness and love to this incredible family and all they are going through. Love and acceptance can conquer all.
Amazing!! Wow. It's heart warming and inspiring to hear of someone doing so much out of love for their child and it paying off.
@@emilysmith1000 Thank You, she is 50 now and works with disabled people because she understands the challenges they face. She has done all the work not me I just gave her the support.
@@CatsJP that's lovely. You must be very proud of her. Thanks for sharing ☺️
I had a friend with FOP she was the bravest person I have ever known
Little sweetheart ❤
Such an incredible story! A blessing for that little girl is having a wonderful mother,so loving caring and supportive, God bless everyone!!❤❤❤
🙏 and 😊 for your sweetheart. She's wonderfully inspirational.
How awful, not to be believed and told your a depressed mum, perhaps offered unneeded antidepressants. Brave Mother and Daughter.. Thankyou for the education and many prayers to you all..
It's horrible isn't it
@@laughingtiger101010 it squashes patient/doctor trust. Gaslighting a parent, should never happen..
You're *
Beautiful wee girl.. God Bless her and her family .❤🙏
Poor wee love, what an inspiring family ❤
The amount of conditions, disorders, & diseases out there is incredible...& so very heartbreaking.
This mom is amazing for fighting for her daughters health being in the medical field we’re not always right you need to listen to the patient it’s so important thank for bringing awareness ❤
Bless her little heart 💕
Aww, I would love to give her a tight warming hug and tell her that my heart is breaking for her and that it makes me so angry because it‘s just not fair! She doesn‘t deserve to suffer like she has. 😡😡😭😭
@@borntoslay3996 Disabled people can still have fulfilling lives, get married, have kids etc. Being disabled does not mean your life is over. I think this little girl is showing there's still so much you can get out of life as a disabled person.
@@borntoslay3996 That wasn’t my point. My point was that your statement of disabled people can’t get married, have kids etc is false. Millions of disabled people worldwide live happy, fulfilling lives.
@@borntoslay3996 This girl and others with her disability can also go on to get married and have kids. People with her disability already have in life.
@@e.l98 I will say though that with FOP, the risk is very high that it will accelerate the progression of the disease. It's apparently not very common for people with FOP to give birth because the risks are much higher.
Such an amazing, little girl ❤
You are an incredible family. Thank you so much for sharing your story.
Seriously, FOP is not super rare, and it's been depicted in so many medical dramas in the last couple of decades, that a GP not knowing about that textbook presentation of the "bunyoned" big toes, is unfathomable! Lovely young lady, Isla is, thank you for letting us meet her!
What A Sweet Beautiful Little Girl Who's So Brave And Shown So Much Courage To Do What She's Doing For Charities I Am I Tears 😭I Pray To The Lord Above That They Can Try And Cure Her God Bless Her And Protect Her Her Mon Is Just An Amazing Lady Doing A Fantastic Job Looking After Her Daughter And She Never Gave Up Fighting Until She Got A Diagnosis For Her God Bless You All 🙏Sending You My Biggest Hugs 🤗🤗 To You You Are One Little Hero Sweetheart 💕♥️
Praying for a healing for her amen
What a lovely girl and a supportive family. Wish you all the best!
Wow , how as a mother you handle your situation so marvelous and amazing , you are remarkable , thank you for sharing ❤
I remember there being a girl up in Scotland who had this condition who wanted to work in the fashion business. I believe she was on an experimental treatment for FOP to slow down the progression. I'm not sure if there was ever an update but it would be interesting to see how well these new treatments are for these people.
A wonderful Mum,who kept pushing to find the diagnosis, an utter disgrace she was fobbed off when her gorgeous little girl was born...
Doctors these days just don't understand patients anymore. I knew I had carpal tunnel but was told it wasn't and I was too young. Went private and the surgeon who saw me was in shock how many years I'd been in pain for and how young I was which he didn't dismiss my age. Had an operation in January and since then I have not had the symptoms I did have. I'm still waiting on the hospital for an appointment about my lipids which they haven't been in touch at all. Anyway, good on her mum to push for the truth because you can have a degree but doesn't mean to say they can be trusted to know everything. And her beautiful daughter being so brave and facing what life has thrown at her is an amazing thing we should aspire to.
What a gorgeous little girl and amazing family. Wishing all the best and thank you for raising awareness about this condition.
What a beautiful family and lovely young lady.
What an amazing mother and daughter, god bless
God bless this family!
What a beautiful little girl. Her parents are just amazing! Doctors need to start opening their eyes to other possibilities when rare symptoms show up. Many mistakes are made by doctors either not following up routine tests are just simply making their own minds up about what something could be, a big could! This couple had to go through different channels to get their lovely daughter diagnosed, and it should not have been that way. I wish the family all the happiness in the world.
What a beautiful lil girl!! Many blessings
What an absolutely beautiful little girl 🩷🧡🩷….
what an incredible girl and family.
What a beautiful inspiring sweet little girl with a rock star of a mom. I have a very rare disease not as rare as her but I cant find a doctor to treat me. I was told by a doctor that in med school that diseases like mine get 5-10 minutes of going over which is really sad as there are so many that never get their diagnosis unless they are looking for something else and they stumble on it. It makes me chronically sick and only a handful of experts in USA.
I'm sorry you haven't connected with a doctor to work with. Good luck with that.
God bless this Beautiful Girl ❤🙌🙌
She’s adorable ❤
TBF let’s not forget this is an extremely rare condition ( thankfully) so the drs do tend to lean towards the most common conditions first… it may have been a less experienced Dr rather than a paediatric consultant too. My daughter was born 3 months prem and was transferred to a London teaching hospital (thank God) she was diagnosed with Cerebral Palsy at just over a week old, if she’d been born at a local hospital she wouldn’t have been diagnosed until around 2 😮. Isla is amazing and I wish you all well for the future xx
Bless her ❤
I wish her and her family well - stay strong.
Amazing what an inspirational girl ! 👏🏼👏🏼👏🏼❤️❤️❤️
how can there be a dry house? i am in tears at her mum finding this all out herself
Brave family.
Why on Earth did the doctors invent ‘congenial bunions’ to her? It’s terrible how individuals will be lied to because they are treated as things to be dealt with rather than people. Recently I have been telling myself ‘me too’ to remind myself that my opinion is just as meaningful as anyone else’s and not to be worried to persist with it.
Yes I think some doctors lie to patients a LOT just to fob them off when they don’t want to deal with an issue or be honest about it.
Some doctors just don’t know either because they don’t have enough experience in certain fields of medicine so they try to pacify people and fob them off to specialists to deal with instead so they don’t look bad because a lot of doctors consider their image is more important.
💯 Always trust your instincts and be persistent especially when it comes to health.
Yet they all expect more money. It is extremely laughable and so sad that this stuff happens. They should be running and playing, that's the things, children should be doing
@@CymbalMonkey that’s a good point. To expect more money while lying to people to get through your day is just despicable.
Medical system traumatizes people . God bless this dear mother .
so much courage . good luck my love ❤❤
Really inspiring girl i know they probably won’t see this but there is a charity called Aeroability at Blackbushe Airport in Hampshire if she likes a challenge they teach people with disability’s to fly (I fly with them) so that could be worth a look. Also there is diasabiliy skiing uk which could be fun for her too.
What wonderful parents ❤
We're all our own advocates for health. Thank god for the internet because doctors don't have a clue and/or can't be bothered. They brush everything off because they can't be bothered to look into anything and they think everyone has a mental disorder and is making up all of our health problems. I've been ill for over 30 years, been prescribed everything, yet doctors still don't know what wrong. It's so frustrating.
Bless her soul ❤❤❤
Hello friends it's so lovely to see your beautiful daughter and you are both so blessed to have her in your lives .the good lord is looking over you all for sure. take care God bless you all.
Lots of good thoughts. A beautiful girl. So glad you have a pretty pony to ride
When are doctors going to start listening to parent's when they know something is right with their child or themselves it makes me so angry, my doctors ignored me for 11 months when i knew my cancer had returned aged 29 4 years after my primary cancer in the end i had to go privately to be diagnosed.
oh my gosh beautiful❤
Brave Mum n daughter
There is a lot of awareness of her condition. It has been documented many times. There is a doctor who has spent his career studying FOP. It is not known to be easy to diagnose. Its a rare disease with a history of studying and its still ongoing. Most cases are not diagnosed. A woman with FOP had her arm amputated because it was thought she had a tumor. I think society needs to stop treating people like they aren't aware. Social media is so abundant that is hard to not be aware. I recall an interview with Dr. Clive Friedman where he said that a lot of doctors just aren't taught about FOP. Society says to not be quick to judge but freely do it when it comes to medical science. They think medical science is set in stone, when its not. If a doctor isn't educated on FOP, doesn't mean they aren't good at what they do. It means that FOP is a rare disease. How many they come across, nobody can say. We need to give a bit of mercy. She was diagnosed a lot sooner then some people. Its been studied enough that she was diagnosed before teenage years, appreciate that.
It still didn't give the doctor the right to tell the mom she had depression 😮. The most rational thing would be to listen to the parent, acknowledge the concern, do more research about the disease and then work together. Instead, the prideful reaction was: I AM the doctor here, not you!!
Bonne chance Nikki et gardez le courage 🍀🍀🍀💖
Bravo, moderators!!
Bless her dear God.
The doctors telling this mother she has ppd should b ashamed of themselves! Doctors today are so narrow minded and unhelpful. Sorry not all, but there are enough of them that just throw a sticker of depression that they get stuck and won’t have an open mind to see where the facts take them. Hallmark of a good doctor is listening to patients and see where the facts take them. I know that from hearing big doctors speak about this
Amazing little girl! 😊
it is appalling the doctors/nurses themselves didn't question an inturned big toe. it clearly is not normal and anyone would have been concerned.
Wow they right out lied to her and i bet they call that little girl a liar when shes suffering in pain just how many lies do they tell
Beautiful girl 👧
amaaazing 💜
I’m so sorry 😞
Can you get her on Palovarotene? They just legalized it in Canada for FOP.
What a sweet family and a precious, smart daughter!!!! Is there a gofundme page for this family?
God Bless.
I think it is so brave for little kiddies to even sit on a tv show and speak. Well done Isla! I'm sure I learnt about this during biology A level or it was another desiese where you get hurt your body grows bones in a different texure to repaire any damages. rather than the inside tissue repairing, it would turn to bones instead.
God bless
I think that she is the mom I want to be.
I am an NHS clinician and I have a patient with this and it is progressing just such a terrible disease
❤❤❤
The medical community is so broken.
Phill it's about time you retired people are sick at listening to you as for this beautiful family I'm sorry off your daughters diagnosis it's so sad and it's so wrong you have to look it up on the internet to find out what it is God bless you all I feel for you
You didn't need to write that about Philip in these comments😢
Then don't watch it?
They're brave to have the comments open with Philip on the sofa still... hide yo kids 😬
Horrible. This has got to be an unhappy existence for the parents and the child.
🙏🏼❤️
❤ her
There is/was a doctor associated with the Ronald McDonald House in Philadelphia, PA, quite a few years ago who specialized in FOP. Unfortunately I do not recall his name. Prayers are with you.
❤❤❤❤
My cousin has FOP he can’t do anything anymore apart from talk. He is bed bound. He is 35 it is a horrible disease. First they thought he had cancer & had chemo. It’s very sad. My brother has 24 care for his son. Just an injection voor blood makes it so much worse.
Make sure you visit him regularly. Bedridden people get lonely.
Doctors play guessing games some haven't a clue
💝
Watch for the dude, he might go after the little girl.