My name is Irfan. I was born in 1981 on 28th of August in the southern coast city Matara, Sri Lanka. I am the third child of eight children for my parents. I have been suffering from a rare disease called Duchenne Muscular Dystrophy (DMD) for the past 24 years. My father is a retired principal and an administrative service officer and my mother is at home, looking after me.
Since I was born, I was an ordinary child like other children. I could walk, but could not run or jump but I could ride bicycle. I frequently fell down. My father had noticed that I was struggling to climb steps, so he had taught me how to climb because I used to touch my knees and leaned on the door frame while I climbed steps. Not only was that but my gait also looked a bit strange. I got admitted to the school where my father had his education and I could get on foot to school till I came to grade three. But later on I had difficulties in walking. Therefore, I was taken to school on a bicycle by my elder brother.
I was not that bright in studies as my siblings but I managed to do well within my ability. I had a hard time with mathematics. I did well at class work but could not score high enough in exams. My class teacher paid extra attention on me. She came to my desk to do the corrections. My classmates were also very kind and lent me a hand whenever I needed any help. I spent most of the time inside the classroom as I feared that I might fall. One day I fell down and hurt my legs while I was standing in the morning assembly. My class teacher asked me to stay in the classroom during the assembly thereafter. Since then, I never left the classroom.
One day when I was in grade one, I had to participate in a kid’s race at our school. I found it very difficult to run to compete with my fellow mates. I finished last in the race and it was a fast walk instead of running. My class teacher noticed it and informed my father about how I struggled to run in the race. After noticing other peculiar changes in me such as my wobbling gait, difficulty in climbing steps and frequent falling, my parents decided to take me to a doctor.
Diagnosis…
I was taken to a hospital in Matara for a checkup. After a clinical examination, a lady doctor suspected it might be DMD but she had requested my parents to go for a second opinion. Then I was taken to a hospital in Colombo for further checkups. Finally, after a needle biopsy test, it was confirmed as DMD. I was seven years old then. Soon after I was diagnosed with DMD, my father had been told by the doctors that there is no cure for DMD and I might live only up to about 18 years. This news had made father very depressed. My father was heartbroken to know about his son’s disease. It was only recently I came to know how much he was devastated by the news through my paternal grandmother. My father had never showed his emotions in front of me. I think it was a great thing about him because he knew well that I should not be affected mentally.
I was at the hospital for more than a week and all I got was only some vitamin tablets. Amidst all these happenings in my life, to be frank, I was totally unaware of what was going on. I had no idea about what I had been diagnosed with and what kind of an illness it was. I enjoyed a lot my stay in the hospital. There was a place for kids to play and I rode a tricycle. There were a see-saw and a swing too. I watched cartoons on TV which was mounted on the wall in my ward. My mother stayed with me and she had a very hard time as there was not any proper place to sleep for those who stayed with the patients. My father visited me almost every day on his motorcycle all the way from home in Dharga Town which is about 50 km from Colombo. My uncle (Father’s first younger brother) lives in Colombo and he too often visited me. I had to stay for many more days in Colombo for further checkups even after being discharged from the hospital. So I stayed at my uncle’s house. I received great hospitality from my uncle and especially my aunt who also had to care for her children as they were very small then. I am grateful to my uncle and aunt for their care and love.
Parents’ struggle and my life with DMD…
Since it was informed that DMD had no permanent cure, my parents were going through a very complicated period. Our neighbours and relatives had started to drive us mad with their various suggestions and advice. My parents had no option but listening to some of those suggestions. I was taken to native doctors, spiritual healers and even to a sorcerer but every effort went in vain. I had to miss many months of schooling while I was getting treatment from a native doctor.
When I was in grade five, following the vacation in August, I had to turn back home from my way to school because I felt very uncomfortable to be seated on the bicycle bar. So, my brother took me back home. It was my last day to leave for school. Trust me, At the depth of my heart, I felt a sigh of relief when I realized that no more school for me. I knew how safe it was to be at home than tumbling and getting hurt. I spent my time at home and started to undergo a different kind of life. My elder brother did his best to teach me the subjects that were taught in my class. However I lost the interest in studying all the subjects and eventually I concentrated only on English and Computer. I read a lot of books in Tamil as well as in English. I could improve my English knowledge through reading. Meanwhile, I spent a lot of time at my father’s printing press which was adjacent to my home and I learned a lot of things about printing. I even did composing types which was very interesting. My father even appointed me as the manager of the printing press since he had to go for lectures at the Teachers’ Training College where he worked as a lecturer.
Becoming chair-bound…
I became chair-bound at twelve years old and since then my life became very boring and some kind of frustration crept in to my mind. My movements were restricted and the things I wanted to do became almost impossible. It made me very irritated. However, I did not realize that I had developed an inner frustration in my mind but it came out in my behaviour. I shouted even for small matters. Even if I wanted to call my mother for any help, I would scream. Very often I got angry with my siblings even for petty reasons. I also became very stern and stubborn. My paternal grandmother used to advise me not to be this much stubborn and angry but I was not ready to listen to any advice from anyone except my father.
My elder brother used to take me out in my wheel chair to our front yard in the evenings. He wheeled me around the yard and it made me very happy. I enjoyed those moments very much. The beauty of the nature captivated my whole being. I used to watch my younger brother and cousins playing cricket in our front yard. I served as the umpire for their matches and everyone respected my decisions. I could learn a lot about the game of Cricket by watching matches on TV. I didn’t miss to watch even a single match that was telecast on TV. Although I had a dream of playing cricket, even just watching and umpiring gave me a lot of pleasure and fulfilled my desire to some extent.
Happy moments…
Before I was chair-bound, I had a wonderful opportunity to go on a trip to Yala National Park. There I had a very adventurous time and it was a memorable outing. We saw a lot of wild animals, especially elephants. There was an elephant which came very close to our vehicle! I was excited to the core and also a bit scared too. I am thankful to my maternal uncle who initiated this trip. I still cherish those sweet memories in my life. After I became wheelchair-bound, I was thrilled to have an opportunity to travel to the hill country. Since my childhood, I had heard many people saying that it is freezing cold in the central province of our country. So, I was yearning to pay a visit there to feel the chilliness. This trip was also arranged by my uncle who took me to Yala National Park. I traveled being seated in a van and the wheelchair was in back of the van to be used whenever I needed to move around. My Lord granted me these wonderful opportunities to view the magnificence of His creation when I was able to travel.
Some years later, before I was completely bedridden, my father took me to Colombo in one of my uncles’ van and this time I travelled being seated in the wheelchair. We visited our uncle’s house and had dinner and then went to my maternal uncle’s house. There a painful accident was waiting for me. While I was being taken out of the van with my wheelchair, I slipped out of the wheelchair and hurt my left ankle. It was a painful moment. I screamed in pain. Somehow my father got hold of me and managed to keep me back in the wheelchair. As I was very heavy, it was very difficult for others to carry me. However we could reach home safely and I had to spend many weeks in bed till I get recovered.
Becoming bedridden…
Days and years passed by……I was almost 18 and sitting in the wheelchair became very uncomfortable. I began to suffer from back pain when I was seated for long hours. One day while I was sitting on an arm chair, a strange feeling overtook me. My face turned pale. Slowly but surely breathing became hard. When I informed mother about the alien feeling, she immediately laid me on the bed and phoned father as had gone out. It was the beginning of the respiratory problem in my life. My father realized that I was not getting enough oxygen since my respiratory muscles were getting weaker. The weakness of the muscles that help breathing is caused by the progressive loss of strength in all my muscles and it is one of the main affects of DMD. Since then, I spent the most of my time in bed and did not get on to wheelchair often. As days passed, I became totally bedridden. I could not even sit for a moment because the breathing was arduous. My life turned even more mind-numbing and time passed at a snail’s pace.
Dawning of a distant light…
I transformed in to a matured boy along with the time of woeful life. I could slowly but clearly realize what was in store for me in the future. My father used to sit beside me and would explain what life is all about and how we must prepare ourselves to face this life. From his words, I could perceive that I should not keep big hopes in my life.
During this period, when everything looked gloomy for my family, there dawned a distant light! My paternal uncle found about the Duchenne Parent Project in USA through internet. He got our family registered on behalf of my father. After a few weeks, my father got a pack of useful information on DMD from the President and the CEO of PPMD U.S.A. Ms. Patricia Furlong . Then a letter from Dr. Elizabeth Vroom, the President of the Dutch Parent Project, followed with an invitation to a Parents’ Conference in Holland. She also has a DMD son. With all these happenings, unexpectedly my father’s life and world outlook took a new trend. New hopes bloomed and an extra courage sprouted within me after my father became a member of the Parent Project. My father says he could gain more knowledge about DMD and meet hundreds of parents like him from all over the world by attending parents’ conferences in USA and Europe.
I should not miss to mention the great help and the generosity of Ms. Patricia Furlong, CEO and the President of PPMD U.S.A., to our family ever since my father joined the PPMD. She has become as one of our closest family friends now. I was excited to get wished by her through a phone call to my mobile on my 28th birthday! It was the first call I received on my new mobile phone which was gifted for my birthday by my father.
Pat's great dedication towards finding a cure for Duchenne has kept us encouraged and enthusiastic. Although she would not be benefited from her effort as she has already lost her two sons due to DMD, it's amazing to see how she has committed her whole life to find a cure for us.
I transformed in to a matured boy along with the time of woeful life. I could slowly but clearly realize what was in store for me in the future. My father used to sit beside me and would explain what life is all about and how we must prepare ourselves to face this life. From his words, I could perceive that I should not keep big hopes in my life.
During this period, when everything looked gloomy for my family, there dawned a distant light! My paternal uncle found about the Duchenne Parent Project in USA through internet. He got our family registered on behalf of my father. After a few weeks, my father got a pack of useful information on DMD from the President and the CEO of PPMD U.S.A. Ms. Patricia Furlong . Then a letter from Dr. Elizabeth Vroom, the President of the Dutch Parent Project, followed with an invitation to a Parents’ Conference in Holland. She also has a DMD son. With all these happenings, unexpectedly my father’s life and world outlook took a new trend. New hopes bloomed and an extra courage sprouted within me after my father became a member of the Parent Project. My father says he could gain more knowledge about DMD and meet hundreds of parents like him from all over the world by attending parents’ conferences in USA and Europe.
I should not miss to mention the great help and the generosity of Ms. Patricia Furlong, CEO and the President of PPMD U.S.A., to our family ever since my father joined the PPMD. She has become as one of our closest family friends now. I was excited to get wished by her through a phone call to my mobile on my 28th birthday! It was the first call I received on my new mobile phone which was gifted for my birthday by my father.
Pat's great dedication towards finding a cure for Duchenne has kept us encouraged and enthusiastic. Although she would not be benefited from her effort as she has already lost her two sons due to DMD, it's amazing to see how she has committed her whole life to find a cure for us.
A struggle for buying a Ventilator…
My father understood the urgent need of a ventilator for me. But buying a ventilator was beyond his reach because a new ventilator cost more than US$ 3,000 and he was not in a position to afford that much of money. My father’s income was barely sufficient to feed our family. He was desperate to get a ventilator by any means as he was well aware that I would badly need one very soon. So, he contacted many ventilator manufacturers and his friends around the world to get assistance. After a long struggle, the president of the Dutch Parent Project, Elizabeth who too is a good friend of my father, came forward to help us. She gifted me a new ventilator! We were amazed at her kindness and my father was relieved to get a ventilator at last! My ventilator gifted me a new life. All praise and thanks due to Allah Almighty! It made things ease and the fear of respiratory problem vanished… Alhamdulillah!
My father understood the urgent need of a ventilator for me. But buying a ventilator was beyond his reach because a new ventilator cost more than US$ 3,000 and he was not in a position to afford that much of money. My father’s income was barely sufficient to feed our family. He was desperate to get a ventilator by any means as he was well aware that I would badly need one very soon. So, he contacted many ventilator manufacturers and his friends around the world to get assistance. After a long struggle, the president of the Dutch Parent Project, Elizabeth who too is a good friend of my father, came forward to help us. She gifted me a new ventilator! We were amazed at her kindness and my father was relieved to get a ventilator at last! My ventilator gifted me a new life. All praise and thanks due to Allah Almighty! It made things ease and the fear of respiratory problem vanished… Alhamdulillah!
Life becomes more complicated…
In the mean time, bedridden life brought me bed-sores. It spread from mid-chest to rib areas. Bed-sores turned out to be very annoying and aching. My mother and elder sister applied medicine to sores after washing them. Later on, my first younger sister took over the job with mother. It was very painful. I tolerated all my pains as much as I could but whenever I could not, I wept. Although life had been piled up with all these intricacies, I did not lose the courage and patience. My strong religious belief helped me to face all sorts of odds and defy them in my life.
With the ventilator on, I could sleep well at night and I became almost addicted to it. I could not sleep a single night without it. My ventilator worked for more than 8 hours a day. After so many years of continuous usage, it became noisier and started to give trouble. One day, it stopped working! Later, it was found that its motor unit had broken down. But thanks to my elder brother he got it repaired in two days through one of his friends who was a technician. So, I was relieved to get my ventilator back because I feared I might have to spend sleepless nights without it. Although it began to function again, the technician warned us that it might stop at any moment.
Life saved…
The progressive muscle weakness due to DMD, leads to serious medical problems, particularly issues relating to the heart and lungs. As my lungs got weaker, things became very hard for me. Whenever I had cold and phlegm, breathing got worsened. I felt hard to cough as my lungs are weak. Thanks to my Lord, my life was saved when I had to go through a very difficult period. I once suffered a lot from cold and phlegm. I could not stay without the ventilator even for ten minutes. The phlegm made it hard to breathe. Therefore, the ventilator worked for about two weeks, non-stop. Everyone in my family stayed up beside me by each taking turns during those days at nights. After many days of tough time, I got well, Alhamdulillah!
Greatest shock...
I faced the greatest shock and sorrow in my life when I lost my elder brother. He was so close to me and did everything he could to keep me happy. He kept company in all my difficulties and dedicated his life to my welfare as a true sibling would do. His love and care comforted my life. He taught me whatever he gained new. He sacrificed many trips and outings by staying with me at home when all others in my family went.
He was so strong and energetic until he was diagnosed with Leukemia. We were shell-shocked by the news and we all went through a period of tremendous grief. He was taken to India for treatment and after the first two phases of chemotherapy, his condition got better and he even came home. But he had to go back to India for the third phase. His condition got worsened just after the start of the third phase. My brother had tolerated all his sufferings and pains and had managed to be positive amidst of those dreadful moments.
Father and my younger brother were there with him in India. They had gone through a mentally devastating period. My dad had to face many challenges and was mentally crushed by going through my elder brother’s sufferings. But my father did not lose hope till the last moment. Anyway everything came to an end when my brother’s heart stopped peacefully on a Friday morning on 14th of April in 2006. When we heard that our brother had left us from this world, we could not bear that insurmountable pain in our hearts. I missed his love and care. I lost a great brother. I consoled myself by praying to Almighty Allah to grant my beloved brother Jannathul firdhous (highest level in paradise).
It took us very long to overcome the grief of his loss. My father was so demoralized by the loss of his beloved son. Our strong faith gave us enough courage to accept the great losses in our life. I miss him a lot…
An excellent solution…
As years passed by, I began to go pale and breathing too was becoming harder even when the ventilator was on. A slight change in my posture also made me go numb. I was losing the guts I had to fight out. Father was desperate to find a solution for this strange new issue. Fortunately, it was time to attend the Parents’ conference in US. There he could meet a doctor to get the medical advice on this complicated issue. That doctor had prescribed Lisinopril as the solution. Soon after I began to take Lisinopril, the strange condition of respiratory intricacy ceased completely, All praise and thanks to Allah the most Merciful!. I felt very much relieved and was amazed by the Lisinopril’s effectiveness! I take a tablet per day. I got back the guts that I was losing in me to continue the battle against DMD.
In the mean time, bedridden life brought me bed-sores. It spread from mid-chest to rib areas. Bed-sores turned out to be very annoying and aching. My mother and elder sister applied medicine to sores after washing them. Later on, my first younger sister took over the job with mother. It was very painful. I tolerated all my pains as much as I could but whenever I could not, I wept. Although life had been piled up with all these intricacies, I did not lose the courage and patience. My strong religious belief helped me to face all sorts of odds and defy them in my life.
With the ventilator on, I could sleep well at night and I became almost addicted to it. I could not sleep a single night without it. My ventilator worked for more than 8 hours a day. After so many years of continuous usage, it became noisier and started to give trouble. One day, it stopped working! Later, it was found that its motor unit had broken down. But thanks to my elder brother he got it repaired in two days through one of his friends who was a technician. So, I was relieved to get my ventilator back because I feared I might have to spend sleepless nights without it. Although it began to function again, the technician warned us that it might stop at any moment.
Life saved…
The progressive muscle weakness due to DMD, leads to serious medical problems, particularly issues relating to the heart and lungs. As my lungs got weaker, things became very hard for me. Whenever I had cold and phlegm, breathing got worsened. I felt hard to cough as my lungs are weak. Thanks to my Lord, my life was saved when I had to go through a very difficult period. I once suffered a lot from cold and phlegm. I could not stay without the ventilator even for ten minutes. The phlegm made it hard to breathe. Therefore, the ventilator worked for about two weeks, non-stop. Everyone in my family stayed up beside me by each taking turns during those days at nights. After many days of tough time, I got well, Alhamdulillah!
Greatest shock...
I faced the greatest shock and sorrow in my life when I lost my elder brother. He was so close to me and did everything he could to keep me happy. He kept company in all my difficulties and dedicated his life to my welfare as a true sibling would do. His love and care comforted my life. He taught me whatever he gained new. He sacrificed many trips and outings by staying with me at home when all others in my family went.
He was so strong and energetic until he was diagnosed with Leukemia. We were shell-shocked by the news and we all went through a period of tremendous grief. He was taken to India for treatment and after the first two phases of chemotherapy, his condition got better and he even came home. But he had to go back to India for the third phase. His condition got worsened just after the start of the third phase. My brother had tolerated all his sufferings and pains and had managed to be positive amidst of those dreadful moments.
Father and my younger brother were there with him in India. They had gone through a mentally devastating period. My dad had to face many challenges and was mentally crushed by going through my elder brother’s sufferings. But my father did not lose hope till the last moment. Anyway everything came to an end when my brother’s heart stopped peacefully on a Friday morning on 14th of April in 2006. When we heard that our brother had left us from this world, we could not bear that insurmountable pain in our hearts. I missed his love and care. I lost a great brother. I consoled myself by praying to Almighty Allah to grant my beloved brother Jannathul firdhous (highest level in paradise).
It took us very long to overcome the grief of his loss. My father was so demoralized by the loss of his beloved son. Our strong faith gave us enough courage to accept the great losses in our life. I miss him a lot…
An excellent solution…
As years passed by, I began to go pale and breathing too was becoming harder even when the ventilator was on. A slight change in my posture also made me go numb. I was losing the guts I had to fight out. Father was desperate to find a solution for this strange new issue. Fortunately, it was time to attend the Parents’ conference in US. There he could meet a doctor to get the medical advice on this complicated issue. That doctor had prescribed Lisinopril as the solution. Soon after I began to take Lisinopril, the strange condition of respiratory intricacy ceased completely, All praise and thanks to Allah the most Merciful!. I felt very much relieved and was amazed by the Lisinopril’s effectiveness! I take a tablet per day. I got back the guts that I was losing in me to continue the battle against DMD.
Gift of my life…
As time flown by, the need of a new ventilator was seriously felt. My ventilator was becoming very old and noisy. It seemed risky to rely on this ailing machine. Hence, my father looked for a replacement. As he did not have the financial resources to buy one, he tried to get a used one through his friends in Europe and the USA. My father’s friends especially PPMD CEO Patricia tried their best to find a used one but unfortunately they did not get a positive response.
In the mean time, my younger brother also was worried about the condition of the ventilator. He was pursuing a course in Quantity Surveying at a college in Colombo and there he had access to the internet. We did not have internet access at our home then. So, he could find the website of the manufacturer of my ventilator while he was searching the web. Then he kept on forcing me to write a letter to BREAS, the manufacturer of my ventilator. After a long thought, I wrote a letter to them explaining my plight on a sheet of paper and then the next day my younger brother typed it and emailed it through his college computer. There was no response from them to my email. One day I received a misaddressed email from a lady named Marie and she was the Marketing Executive at BREAS. Again she sent us a mail apologizing for misaddressed email to my mail inbox. We replied her saying it was ok and reminded her about our email that was sent a few months back. Months went by and we could hear nothing from her. My brother and I lost even the little hope we had.
One day, there was a phone call and I answered it because father was out. I could not believe my ears to hear what the person from the other side had to say! The caller was from the local agency of BREAS company of Sweden and he said that I have received a brand new ventilator absolutely free from BREAS and asked to come and collect it!! Then only I remembered the email I sent to BREAS a few months ago. I was totally stunned to hear this great news and without wasting anymore seconds, I rang my father to tell him about the gift of my life! Father was relieved to hear the news. He too had lost hope of getting a ventilator after all his efforts to get even a used one. My younger brother collected the gift and brought it home from Colombo. He was excited and elated by the free gift from BREAS Company. He was the one who forced me to write an email as I had no hope of getting a ventilator in such a way.
Ms. Marie Nygren of BREAS, who was behind the scene, was rejoiced when I phoned her to convey my gratitude. I was very much stunned by all these happenings and I still cannot believe the things that took place on that day in my life! I was overwhelmed by the generosity of those people who extended their kind help by giving the gift of my life! I began to use the new ventilator and I felt sigh of great relief. The new machine started to perform its job for its master! No troubles… no worries at all.
Another excitement…
Just after I got my new ventilator, another excitement in my life was the supply of broad band internet connection to our home! I was so eager to have access to the net. My father could fulfill my long time desire. I started to use the computer full time. Now I spend a lot of time in surfing the net and time just flies for me!. I made some nice friends chat rooms and then social networks. I could keep up with the latest news worldwide and learn loads of things. My life took a new turn through my entry to Facebook!
As time flown by, the need of a new ventilator was seriously felt. My ventilator was becoming very old and noisy. It seemed risky to rely on this ailing machine. Hence, my father looked for a replacement. As he did not have the financial resources to buy one, he tried to get a used one through his friends in Europe and the USA. My father’s friends especially PPMD CEO Patricia tried their best to find a used one but unfortunately they did not get a positive response.
In the mean time, my younger brother also was worried about the condition of the ventilator. He was pursuing a course in Quantity Surveying at a college in Colombo and there he had access to the internet. We did not have internet access at our home then. So, he could find the website of the manufacturer of my ventilator while he was searching the web. Then he kept on forcing me to write a letter to BREAS, the manufacturer of my ventilator. After a long thought, I wrote a letter to them explaining my plight on a sheet of paper and then the next day my younger brother typed it and emailed it through his college computer. There was no response from them to my email. One day I received a misaddressed email from a lady named Marie and she was the Marketing Executive at BREAS. Again she sent us a mail apologizing for misaddressed email to my mail inbox. We replied her saying it was ok and reminded her about our email that was sent a few months back. Months went by and we could hear nothing from her. My brother and I lost even the little hope we had.
One day, there was a phone call and I answered it because father was out. I could not believe my ears to hear what the person from the other side had to say! The caller was from the local agency of BREAS company of Sweden and he said that I have received a brand new ventilator absolutely free from BREAS and asked to come and collect it!! Then only I remembered the email I sent to BREAS a few months ago. I was totally stunned to hear this great news and without wasting anymore seconds, I rang my father to tell him about the gift of my life! Father was relieved to hear the news. He too had lost hope of getting a ventilator after all his efforts to get even a used one. My younger brother collected the gift and brought it home from Colombo. He was excited and elated by the free gift from BREAS Company. He was the one who forced me to write an email as I had no hope of getting a ventilator in such a way.
Ms. Marie Nygren of BREAS, who was behind the scene, was rejoiced when I phoned her to convey my gratitude. I was very much stunned by all these happenings and I still cannot believe the things that took place on that day in my life! I was overwhelmed by the generosity of those people who extended their kind help by giving the gift of my life! I began to use the new ventilator and I felt sigh of great relief. The new machine started to perform its job for its master! No troubles… no worries at all.
Another excitement…
Just after I got my new ventilator, another excitement in my life was the supply of broad band internet connection to our home! I was so eager to have access to the net. My father could fulfill my long time desire. I started to use the computer full time. Now I spend a lot of time in surfing the net and time just flies for me!. I made some nice friends chat rooms and then social networks. I could keep up with the latest news worldwide and learn loads of things. My life took a new turn through my entry to Facebook!
What I got from Duchenne…
The firm belief in my religion and the
enormous trust in my creator have let me build a strong will power to accept
the tough challenges of this life happily, Alhamdulillah. I’m strong enough to
say that any difficulties or grievances would never forsake either my courage
or faith at any moment, at anytime.
I sincerely think that Duchenne has taught me patience and tolerance in my life. Duchenne has united parents all over the world. Duchenne has helped us identify good people in this world. Duchenne made us to know that still there are a lot of amazingly generous men and women in this world. Duchenne has specially helped me to identify true friends of life!
To be continued…