My Introduction :
My name is Rushit. I am from Surendranagar which is a district place of Gujarat State. I was born on 6th February, 1999. Since my birth, my health was not too good. I often fall in illness. During my age of 3-4 years, I was typically moved slower or with more difficulty than other children. I was appearing clumsy and fall frequently, and have difficulty climbing, jumping or running. Because of my muscle weakness, I was feeling tired more easily or have low energy. I was asked to use of a stroller for longer distances. Some of my muscles (in particular my calves) was appeared enlarged or overdeveloped. This happened because muscle cells are being replaced by scar tissue. This process resulted in being less flexibilities and having loss of elasticity in the joints (also known as contractures).
On 28th June 2003, I fall in ill by fever and my parents take me to the hospital. Doctor's suggested medicals report for the fever and given me medicines and injections. But my fever was not going cured. This happened for 15 days and doctor doubted and asked my parents to test CPK blood report. So, on 12th July, 2003, my parents shocked with the result come out from the CPK blood report. Doctor said to my parents that your child is suffering from Duchene Muscular Dystrophy. My parents was deeply shocked and upset with the news come out from the doctor that this disease is a genetic disorder and this is a life threatening disease and there is no cure for it not only in India but all around the world. Only we can do is to give supplementary nutrition's and physiotherapy exercise.
Efforts for the Treatments:
Since than many other medical reports from different laboratories was done. But the judgment was the same. Time was passing and my father searched for information/help on internet and he found an organization called "Indian Muscular Dystrophy Society" in Ahmedabad, Gujarat. On 9/8/2008, we went there and Dr. J.J.Mehta examined me and gave the same judgment of DMD. We had been advised to become a member of this organization and since the time we are visiting there one in a month from Surendranagar to Ahmedabad (135km). With the help of the organization, we do "Genetic Analysis Report on Duchene Muscular Dystrophy" from Molecular Diagnostic Facility, Chennai on 15/11/2008 and found 49 & 50 exon were deleting and they certified that "Master Rushit H Parmar, clinically diagnosed to have Duchene Muscular Dystrophy." Regularly physiotherapy exercises were done by clinics, organization and by my parents also at home.
Drop from Study:
I studied regularly till 4th, my parents was dropping and lifting me from school's 2nd floor. After 4th standard my presence in the school was very less. Seeing my condition school authorities passed me in every standard till 8th even if I give exam or not. Than the weakness of my hands and legs lead me to take drop from the school. School management was insisting on presence which was not possible for me. Also I was not able to write, seat or walk properly. So I left the school.
Bounded by Wheel Chair:
My health condition was going worst as time passed. I lost ability to walk at the age of 10 to 11. I was falling frequently and injured a lot. So, my parents bring a wheel chair for me from an organization called "Ashirwad Trust for Disabled" Sayla, Dist. Surendranagar (Gujarat).
Since, than I was wheel chair bound. The time of seating on the wheel was reducing because I was not able to seat for long time. My spine, legs, stomach, chest and neck was giving me very much pain during seating position. So, I shorten the period of seating and nowadays I mostly prefer to sleep on bed.
Today when I am writing this, as the disorder progresses, life-threatening heart and respiratory conditions become more prevalent. Major symptoms of heart and lung complications include shortness of breath, fluid in the lungs, and swelling in the feet and lower legs. Shortly I will need to have a tracheotomy tube to help with breathing. It is important for boys with Duchene to be evaluated with an echocardiogram early in the diagnosis, and each year thereafter. Boys with Duchene develop a dilated cardiomyopathy (enlarged heart). Today I am facing lot of complications.
Efforts of My Parents:
My parents have made lot of efforts for me. Now they are very disappointed and feeling stressed so much due to my health conditions. They have done all the tasks which was necessary for me. They have wasted lot of money for my treatment and cure. All the option available they have tried to make me cured. Now they have physically tired and weakened their body by lifting me day and night from bed to washroom & toilet. They used to take many vows from different gods and temples. My father has lots of debts due to my health condition. They have taken loans of more than 5 lakhs rupees from bank for my treatment.
My Dreams and Wishes:
Now my health is going into a worst stage. But I want to live my remaining life with joy and happiness ignoring my health condition. I watch laughter & entertainment programs to be happy. I have also some dreams to fulfill in my life span.
I need some financial supports from crowd funding to fulfill my several dreams. That's why I am writing this post for https://milaap.org
I request to all of you to support me to fulfill my dreams and live my remaining life joyful and happiness.
I have all the medical records, my photos and more. You can also check for the severity of this disease by searching on Google by pressing "Duchene muscular dystrophy".
I am sure that you will help and support me. Even your single penny is valuable for me.
Rushit Hareshkumar Parmar
Kailash Park, Nr.Umiya Township Corner,
Nr.Salimanagar Wadi, New 80 Feet Road,
Mo.+91 9327044441, 9376244441