Save Debasmita Ghosh from Spinal Muscular Atrophy.
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A letter from Debsmita parents :
Moumita Ghosh is with Debashish Ghosh.
#SMA Spinal Muscular Atrophy, a very rare degenerative life threatening crippling neuromuscular disease that changed our life entirely.My daughter was diagnosed with SMA when she was eighteen month.
We were blessed with the most sweetest baby and planned a fairy tale future for her. I remember the day when our fairytale dream shattered and we bought her first wheelchair.
The day of diagnosis was not that difficult. But accepting and understanding the disease and fight to survive this disease is overwhelmingly tough. Every minute of the day, we fight this draconian disease.
A disease that weakens each and every muscle of the body. Weak lungs,weak swallowing, bending of spine, dislocation of hip joint. Full dependency for every small activities of daily living including feeding . Accepting body deformities is a real painful to parents. Accepting their loosing abilities is heart wrenching and stressful. Its like slowly loosing our precious little one. .Then uncertainty of the disease, we never know when a simple cold and cough may turn fatal.
Now, we can stop her from detoriating if only we could access only approved medicine Spinraza which cost Five crores for first year of treatment. This medicine can stop the progression of the disease. This medicine can save my daughter. This medicine can arrest her loosing abilities.
When we cannot avail and afford treatment of our only child who is suffering from a terminal disease, we are also actually dying with her every day. We are helplessly seeing her struggling and debilitating every day.
If only our Goverment be compassionate enough to take initiative in saving our precious children!!!!!!
#SaveSMA kids #AccesstoSpinraza
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