I want to live, I have only 2 years, Please Help | Milaap
I want to live, I have only 2 years, Please Help
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Rs.7,720
of Rs.1,00,00,000
12 supporters
  • Solve

    Created by

    Solve Et Coagula International Foundation
  • I

    This fundraiser will benefit

    Individual

    from New Delhi, Delhi

Story

They were living a normal life, husband worked as a factory laborer and wife as a homemaker. They were blessed with a baby boy and after his birth their life illuminated. the child started to grow normally but after 4-5 years, his limbs movement started to slow down. His cognitive skills also started to diminish. His limbs also showed hardening of muscles along with stunted growth. Poor parents took him to several doctors and started treating him. Some doctors told them that he is weak and not getting enough nutrition while some suggested that they do not massage him properly and many other things. They tried every mean to change the condition of their kid but his growth remained poor and started to deteriorate. Finally, they took him to an national hospital in Delhi where doctors suspected him to a case of Muscular Dystrophy. They diagnosed him properly and after thorough examinations and tests, they confirmed it to be a case of Duchene Muscular Dystrophy. The doctors at the Private told the poor parents that the treatment of DMD is very costly and prolonged.
DMD is a genetic disorder diagnosed in early childhood only in boys and progresses rapidly. Most of the children are unable to walk by the age of 12 and due to progressively deteriorating condition, in later stages need respirators to breathe. The disease weakens the muscles of the body which leads to frequent falling, difficulty in walking and wheelchair dependency.
  • The complications of DMD include scoliosis, a disabling curvature of the spine that can aggravate breathing difficulties.
  • Other complications include cardiomyopathy in which heart muscles start to deteriorate. In dilated cardiomyopathy it becomes difficult for the heart to pump blood to the body.
  • Kids with DMD also develop osteoporosis due to lack of mobility and steroid treatment.
  • Kids also develop joint and spinal complications in which muscle weakness results in joint contractures.
  • Children with Muscular Dystrophy can either be overweight due to steroid treatment, or they can underweight due to loss of muscle bulk
  • Due to weakening of breathing muscles, which causes shallow breathing, it results in chest infections.
  • Tiredness, leg swelling, shortness of breath and irregular heartbeat are common symptoms.
The present condition of their 15-year-old son is bedridden, can’t use his limbs and not able to sit without any support. He can’t stand and is totally dependent on his parents for his daily work.
Their nightmare didn’t stop here. Their second son who is 12-years-old is also suffering from the same disease. Although he is able to walk, his condition is diminishing day-by-day. He is also not able to go to school and it’s difficult for him to climb even a single stair.
These kids need immediate treatment to survive. Their treatment includes a combination of occupational therapy, physical therapy and pharmacology, along with proper nutrition and supplements.
Occupational therapy helps in child evaluation and suggestions in which these two kids can function independently as possible by using self-care as well as work and play related activities. These kids need specific programs according to their physical conditions. Activities that can strengthen the weakened muscles to maintain independence. They need orthotic devices to support weak muscles to improve their functionality and ways to promote creativity and social activities to boost their confidence.


Physical therapy is essential for these kids to monitor the physical symptoms of the condition. Physiotherapy will help these kids to keep them active and keeping right posture while sitting, lying and standing. For the older kid, sleep system and night splints are required. Physiotherapy will also help in the management of neuromusculoskeletal problems which these kids are facing. Physiotherapy will also help to manage the pain that kids are experiencing while walking and standing.

Pharmacological treatments include combinations of medicines which mainly include corticosteroids. These steroids are helpful in the improvement of muscle strength and function, delay the loss of ambulation and help maintain cardiac and respiratory functions. Steroids also reduce the scoliosis. While taking steroids, there are certain conditions which we need to monitor and consider. These conditions include cushingoid features, weight gain and growth inhibition, impaired fat and glucose metabolism, fluid retention and hypertension, osteoporosis with increased risk of vertebral fractures and cataracts.
These kids also need their respiratory functions routinely checked. These kids also need preoperative assessments and senior anaesthetists to provide anaesthetic care which these kids regularly need. They also have occurences of pneumonia which doctors need to regularly monitor.
Nutrition therapy These kids need special diet plans which include a combination of food supplements like Vitamin D, calcium and various micronutrients. In case of older kid, he is having difficulty in chewing and swallowing food. These both kids need a careful assessment and nutritional advice.
These both kids are going in  the mouth of death day-by-day due to lack of treatment and poor parents who are already poverty ridden are forced to see their kids in this condition. They don’t have any option except to shed tears. They think that they are such unfortunate parents who are about to lose both their kids due to their financial condition.
They need you support to see their children to lead a normal life and at least, to survive.

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