“Everyone around us has already started asking us to plan for a second child and do whatever our daughter is now asking us to do. These words are crushing our hopes with each passing day. We don’t want to lose our baby,” says extremely heartbroken teary-eyed mother, Pavithra Rogeeth from Bengaluru.
Pavithra and her husband Rogeeth are fighting for the life of their 7-year old daughter, Jayashruthi who is suffering from Gaucher’s disease, a genetic disorder in which fat accumulates in cells and certain organs.
She was 8 months old, she had a high fever and cold and it took 15 days for the doctors to diagnose and understand her condition.
“We are done crying. Watching our daughter in this crippling pain is itself devastating for us. She cannot jump, climb stairs without help and walk for long or stand so we will have to carry her wherever we go. She is too weak to even hold a glass of water. She even had to get her spleen removed, surgically,” says the mother.Pavithra had to leave her job to save her daughter. Jayashruthi can't talk properly, she takes time to respond. She cannot even sit straight when she has pain in the backbone or her stomach. She just lies in the bed leaning back on the pillow till the pain goes down.
“Finances are becoming our biggest enemy when it comes to saving our daughter. It is very difficult to see her die with each passing day and our biggest fear is that we won’t be able to save her. There is nothing more traumatizing than losing a child," - Rogeeth, father.Jayashruthi loves to go to school and play with kids but she cannot cope with them when it comes to running around or climbing stairs. She is fond of singing and dancing. On asking her how many friends she stretched her hands to suggest the number of friends she has. She replied with a big smile and said, “I have so many friends.” Jayashruthi loves to go to school but her school attendance has sick leave written beside it.
Her medical condition has resulted in her organs to expand. This has affected her eyesight and bones. This disease is universally fatal. The specific treatment of this disease is Enzyme replacement therapy (ERT). The approximate cost of this ERT at her current weight of 14.5 kgs is 50 lakhs per annum. Rogeeth’s salary is not enough to cope with even one-month treatment of his child. This therapy is life long and the cost of therapy increases in age and growth.
Please save this dying girl child, who is now merely breathing on crushed hopes. Please step up and help this girl get back to her normal and happy life. Every penny and help will count in this case.