Mumbai: Parents seek affordable treatment as 6-month-old suffering from spinal muscular atrophy dies

Aarav in a maze of tubes at AIIMS Delhi before he passed away

Parents of children living with spinal muscular atrophy or SMA poured their hearts out on Twitter as they learnt about six-month-old Aarav losing his battle against the genetic disorder on Friday morning at AIIMS-Delhi. The parents expressed helplessness at the fact that the cost of treatment for SMA-Type 1 is prohibitively high.

Following relentless efforts, one of them, parents to baby Teera from Mumbai, have managed to raise resources after the government granted customs and GST waiver of Rs 5 crore on the medicine - Zolgensma.

Aarav's uncle Ankur Kumar is distraught that his condition could not be diagnosed until it was too late

"We do not want any more parents to lose their child to SMA-Type 1. Wake up government, our SMA kids are dying," cried the parents of SMA type 1 children across the country, urging the Prime Minister to intervene.

In its report ‘Rare disorder: 5 more babies on life support across the country' of February 12, mid-day had highlighted the condition of a comatose Aarav, who was on ventilator support since February 9.

The child's uncle Ankur Kumar said his blood pressure plunged around 5 am and in no time the ECG monitor threw up a flat line. "Doctors declared my Aarav dead," he said.

Ankur then braced for another uphill task. "My sister [Poojarani] is fighting Leukaemia, and we had no option but to inform her about Aarav's death. She is in a state of shock and is holding me responsible for not keeping up my promise of getting her Aarav back to her. I cannot even face her," he said.

Last moments of six-month-old Aarav who passed away on Friday

Ankur is distraught that Aarav's condition could not be diagnosed until it was too late. After burying the mortal remains of Aarav in Ghaziabad, Uttar Pradesh, Ankur urged the government to help other SMA-Type 1 kids. He has also decided to be the voice for SMA children.

"Mere pass mama bolne wala chala gaya, aur isilye sabhi SMA bachon ka main mama banke awaj uthauga," he said.

‘Need for institutional support'
"Sometimes, a child's case is highlighted in the media. Generous hands come forward. But not every post about fundraising can go viral. Attempts should be made at the institutional level rather than being limited to case-to-case basis," said Alpana Sharma, Cofounder - Director Patient Advocacy, CureSMA Foundation India, a support group floated by SMA children parents, and whose son is SMA type 2.

She said the medicine has to be imported from the US and many children have in the past received it but only by lottery. "There is no consensus on what the government process will be. All these processes should be changed at the organizational level and all children should benefit from it," she said.

Dr Razeena, Co-Founder and Director of patient empowerment, CureSMA based in Kerala, said they lost nine kids to SMA last year despite early diagnosis and multidisciplinary care.

"All were affected with pneumonia. In some cases, by the time pneumonia got controlled, muscle weakness progressed rapidly and multi-system involvement added to the risk. With the families, our compassionate doctors, and support from outside, we tried for each case. Unfortunately, we couldn't save any of them," said Dr Razeena.

Hoping for a miracle
Meanwhile, the past 17 days have been torturous for the family of 10-month-old Fathima Haizel from Calicut who suffered a cardiac arrest following lung infections. While the baby is on life support, her family and doctors are hoping for a miracle.

In Tamil Nadu, a 4-year-old girl, who spent 28 days in the hospital, has a respiratory infection which progressed to pneumonia. Eventually, doctors made her undergo G Tube Fixation. She has just reached home, though not out of risk. Her muscles have become weak, which make her put too much effort for breathing.

Tweet talk

Unmesh Deshpande@UnmeshDeshpand8:
This is really heart wrenching to lose a child when many life savings drugs are available. We have lost so many lives already. Parents are living under fearLoudly crying face. Have mercy and bring medicine to India at affordable cost. #ZOLGENSMA #Risdiplam #Spinraza #battleagainstsma

Prakash V@prakashvsv
While we, the parents, are ready to take those pain and suffering on us to set our kids free, we could not find a way to do so. We are left with the only option to end their sufferings through the life saving medicines.

Madhuri Devi@Madhuri25293302
If medicine were available b4 getting the condition worst of the patient might be more useful. I request to the @narendramodi to make availability of these medicine in India for my son SMA patient and many more like him who are seek for these lifesaving drugs to save their life.

Feb 9
Date since when baby Aarav was on life support