STORY

Sarvam's Journey

Sarvam born on 30th April 2020 in mid of covid lock down. His parent were very happy after seeing him, he is very cute & charming baby. Sarvam's father feel himself has the luckiest father by taken Sarvam at first time. After birth, Doctor's checked him he was well & fine.  He was very normal has other babies. After discharge from maternity hospital, Sarvam was grandly welcomed to his home. Each and every family members very very happy seeing him. 
From birth Sarvam had good eye contact with everyone, he usually use to see here & their with his cute little eyes & connect with each person with a good smile. During covid pendamic  their was huge responsibility has a parent to protect Sarvam from infection.Sarvam was very active baby, he use to move his neck here & there from birth. Use to do leg cycling as every babies does. Sarvam is very fond of songs, he always use to sleep after singing / playing of song. Those days were very happy moments to Sarvam & his parent. After unlock naming ceremony was celebrated when Sarvam reach 6 month. Naming ceremony was celebrated very grandly with friends & relatives. Every one were very happy by seeing Sarvam, because he use to give a simle to every person.
One night Sarvam got up sleep & started carrying continuously for 3 hrs  Some how, Sarvam's monther made him calm. After that Sarvam reduced feeding, for few days, he found to be weak after that. Some times  is started loosing his control on neck. They taken to children's specialist for this issue. Doctor examined, told don't worry baby is fine it's happens some time., Prescribed some medicine & tonics. This cycle continued for two three months from one doctor to other doctor, change of medicines and all. But parents were very worried about reducing activities of Sarvam.Now Sarvam stopped leg cycling activities also.   Again they consultated the Doctor about Sarvam's condition. Doctor suggested for MRI, Small baby was taken for MRI. After few days MRI report received, everything was fine in report has every family members were praying that reports must be normal. Doctor said that MRI is normal no need to worry, do physiotherapy everything will be fine.But something was triggering in Sarvam's father's mind about Sarvam's health. Than Sarvam was taken to other pediatrician, Doctor examined Sarvam & refered to child neurosurgeon. After  a month appointment was fixed to Dr. child neurosurgeon. Doctor examined the Sarvam, suggested for a blood test. Blood sample was taken in KEL Hospital Belgaum, samples were send to Hyderabad research centre lab. Reports came after one month. Second lock down began at that time. Clinic was also closed. Some how collected the reports & taken online appointment with Doctor. Doctor verified the reports & told that Sarvam is suffering from very rear disease SMA. Spinal Muscular Antropy. &  told I will refer your case to Bangalore to Neuro muscular specialist after reduction in covid case at Bangalore.

Parent of Sarvam were unable to tolerate this situation.Google and studied regarding the  disease found very socking information about that, it was mentioned that the treatment cost of this disease is 2.1 million dollars around 16 crores INR. Than some one suggested the Doctor from Pune how his Child neurologists. In that condition of lock down passing the state boundaries, informing the medical condition to each police at each baricate reach Pune.  Doctor examined the baby Sarvam, verified the Genetic reports and told that is diagnosed by SMS, but detailed report need to get & your reformation as well your doubt will be clear,  again blood sample of Sarvam were taken. Samples were send to Bangalore lab for testing. After 20 days the report received. Sarvam's family were not expecting the same report, but density gave the same result report was positive. Sarvam was suffering from SMA disease. Doctor suggested that their is no treatment for this disease at India, we need to import the drugs from US.  Gene therapy is  life saving  treatment for  Sarvam. Zolgensma is the drugs manufactured by company Novartis, which need to inject to Sarvam before reach to 2 year old,( with weight less than 14 kg).The cost of injection is 16 crores INR. Apart from that other drug Spinraza  is avay but it also costly & need to give number of intervals till it get cure. Doctor suggested that to get the drugs their are two ways one you need to pay that huge amount 16 crores. Other we need to fill the online form to get the name in lottery system, has Novartis company is giving the drugs for 2 babies free every week over all worldwide.  we told Doctor to enroll Sarvam's name in that free lottery system.Doctor told that after enrolling we will receive kit from company to collect blood, so  you need to come Pune once again for blood sample. Doctor prescribed some regular medicine and we came back to Belgaum.After 1 month Doctor called for blood sample. Blood sample was given to the company for lottery system.Sarvam's parents have no option either waiting.

By this almost two months passed away. Sarvam's parents were waiting for cal from doctor for getting Sarvam's name in lottery system. But in mean of August 21 Sarvam started getting sick, his activities reduced. Than again Sarvam's parents rushed to Doctor  Child neurologists fron Belgaum for regular treatment. Doctor once again referred to Bangalore. Sarvam's was taken to Bangalore Baptist Hospital Hebbal. Dedicated team of Doctors related to this disease  examined the Sarvam.Various test conducted  on Sarvam. Doctor suggested that proper care we need to take regarding Sarvam's health, he is suffering from spinal Muscular Antropy, his must will get week day by day. So we need to do physiotherapy  every day to keep his muscles active till he get life saving drug Zolgensma. 

Doctor suggested Sarvam needs Nebulizer twice a day. They gave regular medicine to keep him stable. They further guided us that if his breathing problem increase need to support him by Bipap respiratory support. If swallowing problem increase than need to pipe feed him. Listing this type of condition could happen to Sarvam, Sarvam's father & mother found very helpless to save Sarvam from life threating. 

Presently Sarvam is getting treatment from Bangalore Baptist Hospital.My humble request to Government to take a kind note on this. Very common middle class people cannot afford such a huge treatment cost. Need to take action against this.

 Sarvam's parents have no option left with them to go for crowd funding to save the child Sarvam.