Anushka Panda, 16 from Gurugram, India has Type II Spinal Muscular Atrophy. She and her mother Archana share the fears and challenges of living with SMA II, the lack of friends and effect on lifestyle, the need for pre-marital gene mapping.
Anushka, please tell us a bit about your condition
I suffer from Type II Spinal Muscular Atrophy (SMA). SMA is a genetic disease that affects the motor nerves that control voluntary muscle movements of the body.
I was able to stand with support till I was 3 years old, but that soon stopped as my legs got weaker. We had a female attendant who would then carry me around. I didn’t start using a wheelchair till age 8. My old school had no wheelchair access, so my chair had to be lifted through stairs. My wheel chair is now motorized which helps me move more easily at my new school which is more accessible.
Do you have a family history of your condition?
Yes, my father’s brother has Type III SMA. He is now 50 years old.
How did you mentally/emotionally cope with your condition?
When I feel sad, I start to think of all the good things that have happened in my life.
My parents and my school have been my biggest supporters. My parents helped me cope mentally by encouraging me to be strong and confident while my school teachers have been very understanding.
Tell us about your schooling experience and your hobbies?
For my studies I get a tutor home if I need help with any subjects. I love reading, so studying comes easily. Last year when I gave my 10th board exams, a separate classroom and customized desk was transferred to my examining center. I scored 97.8% making me the National topper in the Differently-abled category. My future goal is to become a Computer software engineer.
I love playing games on my laptop. I enjoy music and have been taking Classical Hindustani music lessons (now via skype) since age 4. My mom says, I learned to sing before learning to speak.
How do your peers treat you?
Most peers at school are very apprehensive about building any friendship, but I do have two close friends. Many a times, other kids have been unkind and mean to me because society has failed to teach them how to act around differently-abled people. I have realized that people who have a differently-abled person at home are the only ones who are nice to me. Our society needs more education! Schools need to be more inclusive, not just physically but also behaviorally. Inclusion will help bring together people of all sorts and make them comfortable with each other from a young age.
What was the biggest challenge you faced?
My biggest challenge has been my spinal brace that I have to wear for Scoliosis. It is tight like a corset, hurts a lot and causes bruising. I have to wear it whenever I am sitting.
What would you advise other children who have SMA?
Never give up! Life is such a strange game, it will keep going on. It will be game over only if you choose to quit!
Your biggest fear?
What I fear the most is what if I give up. What if someday I do not have the guts to go through it any more.
Archana (Anushka’s mom) shares her perspective:
Archana, tell us about the early symptoms.
Anushka was a year old when she was diagnosed.
When she was 8 months old, she had a femur fracture after which she couldn’t bear weight on her feet. At the age of one, when I took her for her routine vaccinations, the Pediatrician noticed that something was amiss. She immediately referred her for neurological testing at a Mumbai Hospital. We took her for the tests the same day. Throughout the testing, she was crying a lot from the pain of the poking needles and mild electric currents that the testing entailed. It was so tough to even look at her tear-filled eyes. On informing the doctor that my husband’s brother had SMA III, we were promptly asked for to go in for DNA testing. The results come in with a diagnosis of SMA type II. We were completely shattered as this was unexpected. I had no family history so it was unimaginable how I could have been a carrier of the SMA gene.
Please describe your experience of managing her condition.
When my husband got transferred to Vapi, we all moved there. Anushka was unable to walk properly since age one but she was a bright baby! She loved her books and music.
With the help of her Pediatrician, Anushka got admission into a regular Preschool at the age of 3.5 years. There were no special schools for physically-challenged children in that area anyways. We hired a female attendant who would carry her everywhere and sit outside her class. Soon we started hunting for a bigger school and settled on Gyandham where the Principal welcomed us with open arms. Getting into a normal school made us feel like our child is leading a normal life.
I decided to go back to work at that time.
Has she had any related complications from her primary condition?
She developed Scoliosis at age 9 years, where her spine is slowly curving. Every year, the angle of curvature has increased making it difficult for her to sit straight. She wears a brace that has to be changed annually since she is a growing child. Initially she started off on a hard brace that was German made and cost roughly 60K. However, it caused a lot of discomfort and we have now moved her to a soft brace.
At the time of her scoliosis onset, her doctor had recommended that we wait till she turns 13 to do a Spine correction surgery. Unfortunately, by the time she reached 13 years, her lung functions had dropped to 37% and she was not eligible for surgery. If we went ahead with surgery, it would be high risk and she could end up on a permanent ventilator. We were between a rock and a hard place, but I did not want to risk losing her so we decided against it. To this day, I wonder if that was the right decision. I wish our doctor had told us to watch her lung functions, so we would not have missed the golden period of her being able to be operated on.
Have you tried complementary medicine or therapies, like homeopathy or yoga? If yes, did it help?
With SMA, any minor infection like cold or flu can turn into pneumonia. Most complimentary therapies are long-drawn out and we just don’t have the luxury of time, we needed to act fast on any infection, so it never worked for us.
Have you learnt anything in managing in your condition that you wish you knew before?
I wish I knew I was a SMA gene carrier before I conceived or even got married. I would advise that before embarking on marriage, both partners get genetic mapping done, so that they don’t end up in a situation like ours. I would like others to learn from the pain we go through as parents.
What changes have you made to your lifestyle?
I continue to pursue my work; I am able to work from home. Our lives revolve around Anushka. We don’t have much of a social life; there is no time for parlours, shopping etc. My only friends are other SMA parents! I have a purpose and just want to fulfill that. I don’t miss out by not having a social life.
What has your experience with Physiotherapy been?
We started her on physiotherapy at 15 months of age. I found a Charity run Physiotherapy Center at Haria hospital in Vapi, which was near our home. Since books and music were her fields of interest, we integrated her exercises around alphabets, pictures and songs. At that time, we did not have access to or know about Physiotherapy specific for SMA. For her spirometry and breathing exercises, I would light a candle and do pretend birthdays so she would have to blow it out 50 times. Now that she is grown up, her physio has reduced to an hour daily.
Tell us about CureSMA India?
One of the SMA moms reached out to us on facebook and we were so thrilled to connect with someone going through the same thing. Slowly we were 10 families on a whatsapp group across India and. In 2016, Biogen released a drug for SMA called Spinraza. The next year, we approached the Health Minister for access and reduced pricing of the drug. Our proposal was to make it affordable and provide younger children first who would be most benefitted from it. We are fighting to have our voices heard and trying ways to spread our message.
What is your advice to other parents with SMA children?
My advice would be to have complete hope and faith in what you do. Also stay connected with other SMA parents so that we can all fight together.
What keeps you awake at night?
I worry that I may lose her by the time this new drug comes. That is my worst fear!
