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Submitted by Zeba Ara on 23 June 2020

Zeba Gufran has two children with Spinal Muscular Atrophy, a rare disease. She shares her fears of dealing with the challenges of SMA compounded during the Covid-19 pandemic and the safety measures the family employs.  

I have two kids Erhan and Affan. Erhan is 1yr10 months old and has from SMA type1 and Affan who is nearly 4 years old and has Type 2 SMA. SMA is Spinal Muscular Atrophy.

Affan was diagnosed when he 18 months old. Until 14 months he used to sit independently, crawl, stand and even walk a few steps with the support of a chair or other furniture. When he stopped walking one day, we took him to an Orthopedic doctor who referred us to a Pediatric Neurologist. He was diagnosed by Dr Vrajesh Udani from Hinduja Hospital in Mahim. At first, we had no knowledge about SMA but then as we started learning about it, it broke us from within. I was 8 months pregnant with Erhan when Affan was diagnosed. Dr Udani alerted us about the possible of the second child also having SMA. That nightmare turned into a reality when Erhan was 9 months old. When Erhan was diagnosed with Type 1 SMA, I was dead from inside. My husband has been my biggest strength.

With two SMA kids life gives us new challenges every day.

Erhan who doesn't have head control at all needs constant attention. Feeding and bathing are the major problems I face as his head falls in any direction.He has recently started developing a pigeon chest which is very common for SMA kids who have deformed spines. He barely even has the muscle power for his bowel movements.

Affan, my older son has adenoids.He has problems in swallowing foods. If he gets a common cold, his adenoids swell up leaving no space to breathe which leads to low oxygen levelsand shivering in the body. A common cold is not so simple for an SMA kid as it can get as serious as Pneumonia. Affan gets frequent colds and coughs but I avoid going to the hospital every time. Over the years, I’m now well connected with his doctors, who consult with me on the phone and advise me on what to do. Just last week, he was sniffling, but luckily, he had no fever. This usually happens when the weather changes. I spoke to his Paediatrician who prescribed me some medicines which helped. His neurologist has suggested a surgery to remove his tonsils, but we will have to wait till he is 5 years of age.

They both require daily Physiotherapy as well so that their muscles do not stiffen up. Sometimes, 2-3 times a day because hands, knees and ankles become very tight. My Physiotherapist makes exercise videos and shares them with me now since I’m away from home.

The Covid-19 pandemic is making the situation worst. Just before the pandemic, I took my sons and flew to Egypt to meet my husband who is employed there. Since then we are in lockdown with my husband. Since Covid-19 virus attacks the lungs and can spread via aerosols, our kids are the most vulnerable because of existing weak respiratory systems.

Related Reading: Coping With Death and Grief During Covid-19 

My biggest fear is losing them to Covid-19 or SMA. I try my level best to keep them safe. I follow these strict rules now:

  • No going out, not even to the park for fresh air
  • No visitors or relatives are allowed in my house
  • My husband is not allowed to even touch the kids unless he showers after returning from work every day.
  • I work on keeping them and the house clean.
  • I make sure they are well hydrated
  • I’m focusing more on homemade foods and snacks and avoiding packaged foods or eating from outside.

As an SMA Family I only wish for treatment for my kids.I don’t know how or when that is possible, but I wish my kids live a normal life as soon as possible.If you are healthy you are blessed!

For more SMA parent narratives click the links below:

To Continue Loving My Son, I Need To Be Brave

My Son Continues To Inspire The Perpetual Fight

People started to look beyond his disability

For narratives of persons with SMA, click below

Ignorance is not bliss

What if I Give Up

I am neither special nor disabled. I am just me