WELCOME TO SARVAM
Sarvam fight against SMA
Sarvam is suffering from a very rear genetic disease known has Spinal Muscular Atrophy(SMA). In this, the gene responsible for the entire muscle function of the body is missing or severely defective. So the child keeps losing out on muscle functions until they eventually lose their life. 95% of children affected by SMA lose their life before they turn 2 years old. While the parents were trying their best to save him from any other infection and make sure that he remains protected,
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The worlds’ most expensive drug costing $2.1million - ZOLGENSMA.
FDA has approved 3 medicines for treating SMA however, none of those is available to Sarvam because his parents cannot afford the exorbitant cost of crores. Zolgensma is the best option for Sarvam as it is a one-shot drug that is approved only for kids under the age of 2. Besides research has shown that the sooner it is administered, the better is the patient’s recovery. Hence the doctors have recommended that he receive Zolgensma before he turns 2.
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Today Sarvam is 1year 4 months old, Doctor suggested for, Bi-Pap machine for respiratory support for him and the time is simply increasing every single day. He cannot balance his neck & head at all and is on the bed all day. He needs daily physiotherapy and has to be given nebulization twice a day. He faces a lot of difficulties in swallowing food and even while drinking water. The movement of his limbs is decreasing rapidly, his muscles are deteriorating and even when He sleeps at night his parents have to change his position as he cannot do it on his own.
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ABOUT SPINAL MUSCULAR ATROPHY
Symptoms
This website gives a short description about Sarvam, he is suffering from rear genetic disease know has Spinal Muscular Atrophy (SMA). It is very disease observed in small children's or born babies. Sarvam is now 1 year 4 months old. He was diagnosed by Spinal Muscular Atrophy (SMA 2) in month of may 2021 first time. He is suffering from different symptoms of this disease. He is not able to hold his neck properly, cannot stand, can't able to seat without support, he can't walk. He is usually suffer from breathing problems. He finds difficulties in swallowing while eating and drinking.
This disease makes his muscles week day by day. Entire body organs will get effected by this disease. His parents are very worried about his health & they want to save their child at any cost. But destiny is that, only one best treatment available to this life threating disease, suggested by doctor that he can be cured. The cost of that treatment is very huge cannot afford by common man. The treatment need to given to Sarvam to cure from SMA is gene therapy. It is one shot drug need to inject to Sarvam know as Zolgensma, manufactured by US based pharma company Novartis. The cost of injection is 2.1 Million dollars, around 16 crores INR.
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 when he took his son in his arms for the first time. After his birth, Doctor's checked him he was very 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 were 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 adorable smile. During covid pendamic their was huge responsibility has a parents 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 songs. Those days were very happy moments to Sarvam & his parent's. After unlock naming ceremony was celebrated when Sarvam reach 6 month old. Naming ceremony was celebrated very grandly with friends & relatives. Every one were very happy by seeing Sarvam, because he use to give a charming simle to every person.
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One night Sarvam got up from sleep & started carying continuously for 3 hrs Some how, Sarvam's mother made him calm. After that Sarvam reduced milk feeding, for few days, he found to be weak after that day. After some days he started loosing his control on neck. Sarvam's parent's taken him to children's specialist for this issue. Doctor examined Sarvam & told "don't worry baby is fine" it's happens some times with babies. Doctor Prescribed some medicine & tonics. This cycle continued for two three months from one doctor to another doctor, change of medicines and all. But Sarvam parents were very worried about reducing activities of Sarvam. Now Sarvam stopped leg cycling activities also. Again they consulted the Doctor about Sarvam's condition. Doctor suggested for MRI test, little Sarvam was taken for MRI. After few days MRI report received, everything was fine in report has every family members were hoping & 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 Doctor of 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. Gentic 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 genetic disease Spinal Muscular Atrophy(SMA). & told he will refer their case to Bangalore to Neuro muscular specialist after slowdown of covid case in Bangalore.
Parents of Sarvam were unable to tolerate this situation. "Google" & studied regarding the disease found very shocking information about that, it was mentioned that the treatment is not available in India & the cost of drug for this disease treatment is 2.1 million dollars around 16 crores INR. Than some one suggested the Doctor from Pune who his child neurologists. In that condition of lock down, passing the state boundaries, informing the medical condition to each police at each baricates reached Pune. Doctor examined the baby Sarvam, verified the Genetic reports and told that Sarvam is suffering from Spinal Muscular Atrophy (SMA), but detailed report need to get & Sarvam's parents doubt 's will be clear. Again blood sample of Sarvam were taken. Samples were send to Bangalore lab for retesting. 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 Spinal Muscular Atrophy (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 he 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 available 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 enroll Sarvam's name in lottery system( Free drug), 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 enrollment of Sarvams name in lottery system. Sarvam's parents have no option either waiting.
By this almost two months passed away. Sarvam's parents were waiting for call 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 from 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 Atrophy, his muscles 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 the parents that if his breathing problem increase need to support him by Bi-pap respiratory support. If swallowing problem increase than need go to pipe feed him. Listening this type of condition could happen to Sarvam, Sarvam's father & mother found very helpless to save Sarvam from this life threating disease.
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.
Least Sarvam's parents have no option left with them to go for crowd funding to save the loving son Sarvam.
Our intention to write this short story to know how depressive situation a family can go through when they face any medical emergency. When they know that their is a medicine to save their son Sarvam, but they cannot give him because that can't afford it, a huge amount that they can never earn during their life span. 2.1Million dollars (16 crores INR) is very huge amount , that cannot be affordable by common man. But their is nothing impossible. India's population is 130 crores & drugs cost is 16 crores. If a small helping hand from each & every person can make it possible.
My humble request to each & every person to support this campaign to save little Sarvam, by keeping humanitarian alive in us.
SUPPORT TO SAVE SARVAM BY CLICKING BELOW LINK
Belgaum Karnataka
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