Chandukant Father of Ankurkant
To all those parents of Duchene boys, I send you warm regards from India as a parent and as founder of Association of muscular dystrophy. I write this message on a special occasion as today it is the 31st birthday of my son. When he was diagnosed with DMD all the doctors had told me that he will not survive beyond early 20's but we as a family refused to believe what the doctors said. We decided to fight and in our battle against DMD, stem cell therapy done by Dr. Alok Sharma played a major role resulting in my son still being with us at the age of 31.
He was on a ventilator for many years before stem cell therapy and could not swallow on his own. After stem cell therapy he could swallow food after almost 8 years. His stamina improved and finger movements became better. He uses the computer now. To all the parents reading this summit all I can say is first don't give up on your boys and second use a combination of stem cell therapy and rehabilitation to not just give life to our boys but also to improve their quality of life. I would like to acknowledge all the doctors therapists and researchers at the NeuroGen brain and spine institute who are devoted to the cause of Duchene muscular dystrophy and other neurological diseases.
Mrs Rekha Tripathi (Ashvik's Mom) Indianapolis, USA
We always hoped our son Ashvik should be able to see the world as we do and should be independent. At NeuroGen Brain and Spine Institute we got this faith. We have seen many positive improvements in Ashvik after stem cell therapy and are looking forward to see more and we are very positive and confident that Ashvik will be soon independent and will grow up to be a very good human being. As we had hoped, his vision has been improving over a period of time (he has cortical blindness along with autism). Along with reduction in hyperactivity, we have noted improvements in attention span, eye contact, cognition, imitation skills, ability to interact with peer and adult, Ability to perform fine motor as well as gross motor tasks has also improved. Most importantly, behavioral issues have become less , which has led to fewer melt downs in the last 10 months.
We are grateful to Dr. Alok Sharma and his team for the treatment and the wonderful and memorable experience at NeuroGen Brain and Spine Institute.
Marina Delle Vergini Leo's Mom (London, UK)
"He can play short tunes on the piano and solve the rubik's cube in 20 seconds. he can solve 200 pieces of puzzles in 10 minutes!"
Our son Leo is 12 years old boy who has Autism. He has undergone cellular therapy at Neurogen Brain and Spine Institute. With the help and constant support of real professionals he has made enormous progress in all areas. From not being able to hold a pen in his hands he can now write and read, he can solve 200 pieces of puzzles in 10 minutes. He can play short tunes on the piano and solve the Rubik's cube in 20 seconds. He wants to interact and engage with everyone constantly which was a dream for us. The Neurogen staff are highly professional, and once you're out of the hospital they will remain your life guards anytime you need them. We, Leo's parents, would strongly recommend Neurogen to anyone, who's considering cellular therapy.
Mr. Danien Okaka(Marvin's Father)
My son Marvin is 9 year old and is suffering from Ducchene Muscular Dystrophy. As a Parent we were naturally concerned as DMD is a progressive disorder so we consulted lot of doctors and therapists only to know if there was any hope. After lot of research we found about NeuroGen and it seemed promising.Its been 1 and half years since we took stem cell therapy for our son and Marvin has shown a lot of improvements. His stamina has improved. His legs have become strong, due to which falls have stopped completely and he has started walking in normal pattern. He is able to ride his bicycle for a longer time. His handwriting and concentration also improved. And his deterioration has stopped. We are really thankful to Dr Alok Sharma, Dr Nandini and entire NeuroGen Team for their nonstop efforts to make Marvin lead a better life and we should difinitely recommend it to other parents.
Om and Rupesh Vishwakarma
My son was diagnosed with muscular dystrophy in early childhood, at that time he could do everything just like any other child. Doctors said that there is no treatment of this disease. They advised us to undergo regular rehabilitative therapy so that the muscle strength can be maintained for a while longer but he was slowly becoming very weak. As the time passed some of the early symptoms we observed were difficulty in getting up from the floor. Slowly he started getting up with his hand on the knees. Then he started falling suddenly while walking and this kept progressing. We came to know about stem cell therapy through one of our family friends. Initially we were worried if there will be any side effects and what if my son becomes worse. When we met Dr. Alok Sharma he explained that it is absolutely safe and that gave us hope for the first time. After taking stem cell therapy he advised us that we should continue regular rehabilitation. 8-9 months after stem cell therapy he started walking with walker and completely stopped falling while walking. He could climb stairs even with his physio, his stamina improved, his posture is much better. His spine was bent earlier but now it is almost straight. For the first time I am confident to let my son be in the care of others while I go out of the house. Earlier I felt the need to be with him always. I am happy that my son is improving slowly. My other son was also diagnosed with DMD when he was 2 with genetic testing. He also underwent stem cell therapy and we saw that his performance in sports and other physical activities was much better. I would like to tell all the parents that stem cell therapy benefited my children a lot, but it is very important to continue rehabilitation after the treatment. I am very thankful to Dr. Alok Sharma that when there was nothing that could be done for DMD in the whole world he gave us hope.
Mr. Rahul Deshpande(Patient)
My name is Rahul Deshpande. I am 29 years old. I was diagnosed with muscular dystrophy at the age of 17. No one in our family had ever heard of it. We had no history of it in our family. The doctor explained to us the progressive nature of the disease. We were shocked and a bit scared by the diagnosis. Because, living with any kind of disability, no matter how severe it is, has many challenges. You have to make so many adjustments, both physical as well as psychological. Though the doctor had told us that this condition was incurable, we tried different types of treatments. But, none of them made much difference. Then I came to know about stem cell therapy. There was a ray of hope. I underwent stem cell therapy in March 2013 for the first time and had the second shot in September 2013. After undergoing stem cell therapy, I experienced many positive changes. My standing balance improved and walking over rough surface became easier. Getting in and out of car/rickshaw also became easier. There was significant improvement in my stamina and I could perform all my daily activities with ease. In the last twenty two months I have not noticed any deterioration. I feel, looking at the nature of the disease, this is the biggest improvement. I can walk much longer distances without fatigue and this has also helped me in my day to day activities. Now I am trying to remain as active as possible. Stem cell therapy was beneficial for me and I am grateful that I came across this therapy and could slow down the worsening.
Mrs. Prachi Deo(Shantanu's Mom) Mumbai, India
When Shantanu was six years old, we found out that he had ’Autism’. We were completely crushed after finding out that our son cannot learn like normal children. He underwent stem cell therapy at NeuroGen Brain and Spine Institute after which his graph progressed upward, and much beyond our expectations. Shantanu’s hyperactivity and aggression reduced significantly. He had self-injurious behavior which has stopped completely, his understanding, cognition, attention concentration has all improved tremendously. He can read and write much better now. He can converse in English, Hindi and Marathi (3 different languages). He has passed his 5th grade,8th grade and 10th grade in the last 4 years He is now pursuing higher studies. He can do all the housework like a normal individual. He takes care of his sister, goes to buy groceries and other items from shops. He is quite independent and we owe all of this to Dr. Sharma, who stepped into our lives as a savior. I would say this therapy is a boon for children with Autism and when we had lost all hope, stem cell therapy showed us light and filled our lives with happiness all over again. I would strongly recommend this treatment for all children with autism, since it is safe and effective.
Mr & Mrs Mathenge (Victor’s Parents South Africa)
Our 13yr old son, Victor had been diagnosed with Autism, for which we decided to give him Stem Cell Therapy at NeuroGen Brain & Spine Institute Mumbai last year. With all the encouragement and proper guidance tih respect to all his therapies that we received there, Victor has begun showing significant improvements. From being a very hyperactive child with marked speech delay he has started speaking a few simple words now, who is able to sit for longer periods, and is able to finish tasks given to him. He has thankfully become quite manageable now. NeuroGen is a very committed team under a very able captain Dr Alok Sharma. We love their commitment and selflessness and we as parents would definitely recommend it to other parents.