Whilst we all are still talking about diseases like AIDS that seem incurable and dangerous, we are unaware of the fact that there are hundreds of people around the globe who are have rare diseases that are not only incurable but really painful both mentally and physically.
The beautifully smiling girl in the above picture is Carli Henrotay. Carli turned 24 years old this year and she is living in Saint Louis, Missouri. In her childhood up till the age of five years, Carli and her parents were totally unaware that life was not all normal for their beautiful and ambitious daughter.
Carli was only five years old when she fell badly from a bar stool on her back. After this incident, she suffered from really bad swelling on the back and was suffering from utter pain in the affected area. Upon taking her to a physician, her parents received the most shocking news about their daughter.
Dr. Martin Schmidt, who diagnosed her condition, had already seen a patient who was suffering the same condition. As soon as MR. Schmidt saw the swelling on her back, he was soon interested to have a look at her feet toes.
"He looked at the swelling and immediately knew that he had to take my socks off and look at my big toes."
Carli Henrotay's big toes were really small than other toes of her feet and this is the most visible symptom of having Fibrodysplasia Ossificans Progressiva.
FOB is a disorder where the muscular tissues and connective tissues like ligaments inside the human body start to get ossified. The act of getting ossified generally means that the tissues start to get replaced by bones or in a simple way "the tissues become bones forming an extra and secondary skeleton inside the body hindering the movement of the body."
The more the body is injured in case of any small to the big incident, the more accelerated is the process of the muscles changing into bones.
In the case of Carli Henrotay, after hurting her back, the whole back area of her body including her neck and hips joint became stiff restricting her to move any of these areas of the body.
Carli can not move her arms towards her head and she hardly is able to move her hands towards her mouth to be able to eat something by herself. She limps whilst walking because one of her legs is not parallel to the other due to pulled and stiff muscles. There is difference in length of both her legs.
Whilst standing on her both feet, it is not possible for Carli to stand straight. If she is on her two feet, her body including her head gets lowered down and she can only look at ground level. To help herself with this issue she has adapted the Flamingo style of standing on one leg with her other leg pulled up from knee level. By using this Flamingoesque pose Carli gets able to look straight and talk with others.
She is unable to do simple activities like doing her own hair, changing clothes, driving, or taking showers. Her mother used to help her with her daily needs of chores whilst her father used to drive her to places before her moving in with boyfriend Billy.
She also had to get some of her molar teeth removed because due to her mouth's muscles turning into bones, she cannot open her jaw more than 2 millimeters. She got her teeth surgically removed to be able to eat food herself via her mouth. Though it is still not easy to put food in her mouth and chew it due to a locked jaw, she still manages to do it well.
FOP is such a fragile condition that even a minor paper cut can start the process of muscles turning into bones. This is the only reason why medical science has been unable to find a cure to this disease as if they will try to operate on any body part, there is the risk of starting the bone formation process wherever the cuts or incisions will be made in the skin and muscles.
The life expectancy of those with FOP is only 40 years. The condition keeps getting worst with time starting from early childhood to the age of expectancy that is 40 years.
Despite all these tough times, Carli did not give up on her life and she completed her graduation in the year 2018. It does not stop right there, she is also a social person having who loves to maintain a social circle and she loves to go out and enjoy life and sports as well.
Carli gave love a chance in her life as well and she was lucky enough to have found the most loving and gentle partner in her life. Her partner Billy has been with her for eight years now and their relationship is nothing but a major goal. Carli and Billy have now moved in together in the year 2019 as she wanted to become as independent as she could whilst she is in this life.
Due to most of her body becoming stiff and her joints being locked, it is difficult for Carli to walk long distances on her own feet. She uses a wheelchair and has dogs as assistant dogs to help her with her day to day activities. She also uses helping sticks to hold and reach the stuff that is placed in high places that are out of her reach and ease.
Carli Henrotay makes FOP feels like nothing but a minor health issue, but after going through the details one can hardly imagine her pain. She does not only face restricted body movement but she is in constant pain all the time as well. It is her will power that keeps her going despite having constant body pains and restrictive body movements.
Carli has given everyone a reason and an example that nothing in life can make one feel less blessed. If she can accomplish so much in her life with FOP, then there is no one else who should be complaining about life and God for whatsoever troubles they are in.
This story for sure is one of the top loved stories for Hfeeds and we will always come back to reading it whenever we will need motivation.
If you loved this story, then please show loads of love to Carli & Billy and share this article and the beautiful story of Carli Henrotay with everyone in your family and friends to give them motivation and inspiration.
“You can dance in the storm. Don't wait for the rain to be over before because it might take too long. You can do it now. Wherever you are, right now, you can start, right now; this very moment.”