LIFE OF JANISH

Every child deserves to lead a happy and fulfilling life. Unfortunately, my son Janish was denied even the basic rights to a normal life as he was born with SMA Type I – a Rare Genetic Disease – There is no treatment available in INDIA, the only treatment is in the USA at a humongous cost of $2.1million (16Crores INR)– unable to afford even for those in the upper echelons of society.

A frail beginning       

 

On 20^th February 2020, my wife and I were blessed with a darling baby boy whom we fondly named Janish. Because of the pandemic situation, we elected to follow up with Dr. Sreelakshmi a pediatrician close to home. Soon we noticed that our son was unable to gain head control like other infants. Thereafter, Janish continued to grow gaining little or no muscle control. He never was able to sit up or stand. Even when Janish was 6 months old, we still had to carry him around like an infant. As an infant, he never kicked his hands and legs or turned over of his own accord. In short, he failed to achieve even the most basic milestones during his first six months of his life.

A new-born’s medical journey

Any new-born today has to undertake a medical journey from the time of conception until he is about 10 years old visiting his or her doctor regularly for check-ups and vaccination. While these are positive steps, they are nonetheless disturbing. Janish’s journey was all this and more.

When we first noticed that he was neither gaining neck control nor kicking his legs and hands, we consulted our pediatrician Dr. Sreelakshmi. She referred us to Bangalore Baptist Hospital. Out of concern, we also consulted another pediatrician Dr. Sai Manohar at Sahakarnagar for a second opinion hoping that he would say it is just a delayed milestone and nothing more. Sadly, we were disappointed. Dr. Manohar referred us to St. Philomena Hospital/Manipal Hospital/Baptist Hospital. This was only a beginning. Shuttling from hospital to hospital and doctor to doctor, we finally met Dr. Bidisha Banerjee (Pediatric Neurologist) and Dr. Sridevi Hegde (Medical Geneticist) at the Manipal Hospital in July 2020. They prescribed some Genetic tests and suggested physiotherapy. After much distress, expense, and several opinions, consultations, and prescriptions. After receiving the genetic test reports we referred Dr. Shruti Patil (Pediatric Genetic Specialist) at the Ramaiah Hospital informed us that Janish has a condition called SMA Type 1. Then we were finally referred to Bangalore Baptist Hospital, We consulted geneticist Dr. Madhuri, and Dr. Ann Agnes Mathew  to understand our son’s condition.

What is SMA?

SMA (Spinal Muscular Atrophy) is a rare neuromuscular disorder in which the patient gradually loses motor neurons that control the motor functions of the body. This results in muscle wasting – a gradual deterioration of muscles. It usually affects infants at birth and if left untreated leads to death. The SMN (Survival of Motor Neuron) genes control the survival of motor neurons in the body. When these genes are not as they should be, the result is SMA of varying degrees. Janish had Type 1 – the most severe kind. This means that he never gained control of his motor functions and was unable to perform even the simplest tasks like breathing and swallowing. As he grew, his condition deteriorated further and he had to breathe with the aid of a machine and eat through a tube.

Janish’s Developmental History

After the diagnosis in August 2020, we had to admit Janish for respiratory trouble in the month of Sep 2020. Doctors detected Aspiration Pneumonia and put him into the ICU, as he was unable to breathe voluntarily. 

Before admitting, he was tested for COVID and put in isolation for 24 hours where

his mother was unable to nurse him. In the ICU, the staff – in an effort to discover his veins and insert a cannula – poked him multiple times on his hands and legs. It was heart wrenching to hear him cry out in pain and discomfort but it was

nothing compared to when his cries when they inserted the OG tube – a tube that is inserted along the oesophagus into the stomach – which was required because his digestive muscles were too weak to process even the mashed food that babies eat. There was nothing else left to do so we took him home – tube and all – and began accumulating funds for the treatment which costs 2.1 million USD. Meanwhile, we were instructed not to remove the BiPAP(Respiration Support machine) machine except for feeding 8 to 10 times a day. Even a child has feelings and emotions. Whenever we eat in Janish’s room to keep him company, the aroma tickles his taste buds and he opens his mouth in anticipation. Unfortunately, he cannot have a taste of all that he smells.

An Expensive Journey

You will appreciate that any parent with a child in Janish’s condition will leave no stone unturned for a resolution. Apart from the high hospital bills which insurance

refused to cover, we were faced with the choice of purchasing or renting a BiPAP machine. Purchase was beyond our reach – a BiPAP machine costs anything from INR 75 thousand to 2.5 lac – so we decided to rent; but this meant recurring monthly expenses. We are already floundering in expenses because of the regular medicines, 24x7 care, and specialized food preparations that are necessary to sustain Janish. His diet consists of completely ground and mashed semi-solids suggested by a dietician supplemented by vitamins and other oral nutrient supplements. Our 10 month old Janish is bed ridden and requires a 24x7 attendant who can clean, wash, bathe, and feed him.

Treatment for SMA

The only treatment for SMA is gene cloning. A working clone of the SMN gene is placed inside a vector. The clone activates the motor neurons and helps motor development. The technique and gene – called ZolgenSMA – have been developed in the USA, and is a once in a lifetime inject-able treatment.

It is only available in America and it costs $2.1 million dollars.

If not administered within 2 years of age, all our efforts will go in vain, as a child with untreated SMA does not live beyond 2 years. 

No new-born or his parents deserve to experience the trauma of SMA which denies a baby even the basic right to a normal existence let alone a life of fun and play which is the birth right of every child. We need to raise a minimum of 16crores INR for Janish’s treatment.

You donate funds for orphanages in hope of providing a child the benefit of a fulfilling life. We appeal to you, “Please donate a mere INR 100 towards the treatment of my dear son, and remember him in your prayers. I understand that parting with even INR 100 may be difficult for some. To them I request with folded hands – please share this message and do your bit in helping Janish”

If this appeal secures even 16 lakh people, we can hope to save a little baby who has yet to experience the wonders of this world.

I thank you in advance for whatever help you can extend. 

For More details Please Contact/WhatsApp - Naveen (Father of Janish) +91-9611781004

Please click the link below to donate-

 https://www.impactguru.com/fundraiser/donate-to-baby-Janish

Doctors's Testimony on Baby Janish