Meet Umar, a twenty-eight year old graphic designer living in Lahore, Pakistan, who doesn’t let his disability dictate his life. Ever since birth, Umar has suffered from a disease known as Osteogenesis Imperfecta, which is a genetic bone disorder resulting in soft bones that break easily and do not form normally. Osteogenesis imperfecta affects roughly 1 in every 16,000 to 20,000 people, and there are an estimated 20,000 to 50,000 people in the United States living with this disorder.
Typically, a person living with a similar stage of osteogenesis imperfecta as Umar cannot live completely independently and often requires a caretaker on a daily basis. While it impacts many aspects of his life, this condition does not affect fertility, so Umar can still have children. There is currently no cure for osteogenesis imperfecta, so those suffering from this disease must live their entire life with it.
In his society, people believe that such disabled people like Umar are not able to do anything, and they are a burden on their families. He says that his mother was the real everyday hero, because she raised him to believe that he is no less than any other man. Umar’s mother brought him up as a normal human being and taught him that he is not like everyone else in appearance, but that he is a better person than them.
Umar can work to improve his condition by going through daily physical therapy, whether through visiting a therapist’s facility or having one visit him at home. The hospitals providing these facilities are approximately 40 kilometers (25 miles) away from his home, which would be difficult for Umar to travel every day.
Additionally, he cannot yet afford to pay for a physical therapy home service, so Umar is currently trying to do the therapy by himself, but he is struggling to do so.
How often do bones break with Osteogenesis Imperfecta?
As a child, Umar’s bones were very brittle, and this caused frequent and multiple fractures while growing up, mostly occurring in his arms and legs. Every time one of his bones would break, his family would take him to a Jirrah (traditional Pakistani expert of joints and bones) instead of a qualified surgeon.
As a result, his fractures were not treated properly, and his bones became deformed and not aligned correctly. This is why he has small thighs, weakness in his lower body, increased size of his ribcage, scoliosis in his spine and rounded shoulders. His height is much shorter than an average osteogenesis imperfecta patient and his lower body does not have enough strength to lift his own weight.
Who gave Umar confidence to carry on?
Throughout his life, his entire family played vital roles in making Umar the self-dependent man he is today. He says that his mother was the person who gave him the confidence to do it all, his father was the person to carry him everywhere and his brother was the one who brought him to work at the studio.
Umar says that his mother devoted her entire life for him, as she would stay up all night with him when his bones would fracture, and she has been taking care of him for 28 years. This taught Umar that a man can achieve whatever he strives for, but striving for the sake of someone else is what makes someone a true hero.
Accordingly, Umar is teaching skills free of cost to needy and disabled people to help make them self-dependent. He said that he has taught over 50 students who are now self-dependent and earning good money. Umar feels proud when someone feeds his family because of the skills he has taught them.
How can Umar Mughal give back to others?
On his way to the studio, Umar would see a lot of handicapped people begging on the streets and at the traffic lights. Being a disabled person himself, he always thought that these people are not abnormal, they just need the right place to fit in. After becoming self-dependent, Umar aims to provide them with the right spot where they would fit perfectly, so they too can achieve the sense of achievement and purpose that he has attained.
He aims to make an institute or a shelter where disabled and abnormal people will be able to learn, earn, live, eat and spend their lives the way they deserve. He wants to get married and start a family like every normal man.
His family will teach the disabled people and help them to work and earn their livelihood within the shelter, so that they don’t need to reach out to others, but be able to help those in need. They will then further teach these people to earn a living on their own. This will create a chain of employment andpurpose, and many more people will get earn a better standard of living.
According to Umar, the best gift you can give to a disabled man is self-dependency, so he will consider it a success if he is able to do this. Umar is very motivated, and he believes that even his financial issues wont stop him from helping people and building them a home.