Her parents have literally shouldered her dreams. Preethu cannot move without support. This story is about her.
“This child cannot walk. With time she will not be able to move. Her bones are getting brittle. As the child grows, the complexities of her illness will also increase,” the Child specialist at Thiruvananthapuram Sree Chithra Thirunal Institute of Medical Sciences and Technology informed Jayaprakash and Radhamani. Each word was a shattering blow to the young couple. They looked helplessly as their one-year-old baby cried incessantly. Jayaprakash held the baby in his arms and cried, even as Radhamani was gently caressing the baby’s hands. The doctor was not exaggerating. She never walked again.
But her parents carried her dreams forward-literally and figuratively. They taught her to dream big and today she is a Chartered Accountant, a journey which would have been impossible if not for her parents who stood by her like the rock of Gibraltar.
This is my story
Preethu was born in Kuttanadu on April 30, 1994, to Jayaprakash and Radhamani. When she was 6 months old, their world came crashing down- the baby was unable to get up. Each time she tried; she would collapse on the floor. But the parents took heart in the fact that perhaps it is part of her growing up. Babies usually trip and fall before they learned to walk after all. But with each passing day, they started getting anxious more so when it dawned on them that their daughter’s legs did not have the strength to hold her. She stopped playing with her hands and legs after a point.
When they showed her to a doctor, he comforted them- wasn't she trying to get up? Nothing to worry about at all! But it was not to be. Preethu’s body started weakening, she started losing weight alarmingly. From then on, their life revolved around hospitals, till they reached Sree Chithira Thirunal Institute of Medical Sciences and Technology- she was diagnosed with Spinal Muscular Atrophy Type 2, a rare medical condition.
We put up a big fight
“She will not be able to move without anyone’s support”- though the doctor’s words sounded cruel, they knew that it was a reality which they need to accept at the earliest. One of the first decisions they made was to bring her up without putting any restrictions on her desires. They treated her as if she was a normal child. They really listened to her and encouraged conversations. She had an opinion about everything, and they could not be happier. From her clothes to books to even the shade of her nail polish or jewellery, Preethu had the final word.
When she was 6 years old, Preethu was enrolled in the neighbourhood private school. Her mother would carry her to school every single day. That is when little Preethu first realised that she was a “special child”, different from the rest of the students in her class. She would watch quietly when the rest of the students played. Just a casual smack from them was enough for Preethu to fall from the chair. When this became a regular event, her mom started accompanying her to class. Her mother sat next to her as Preethu rested on her. That always remained her biggest support system!
Preethu was a bright student who represented her school for science exhibitions and other extra-curricular activities. She had a special talent for puzzles and won several prizes for quiz competitions. They transferred her to Mangombu Avittam Thirunal Govt Secondary School and then on the onus of carrying her to school fell on her father. When he could not do this regularly, most of her studies were done at home.
Appearing for exams
It was her board exam, and she could ask someone to assist her but Preethu declined. And she was already having breathing issues and severe pneumonia. It was difficult to dictate her answers to someone. She was excited about writing the exam and had come well-prepared. But as she started writing, her hands were betraying her, and time was running out. If only her hands were as adept as her brain. A distraught Preethu found the answer sheets stained with her tears. Desperately she tried to shift her pen from right hand to left hand but to no avail. Each examination turned out to be a struggle. When she bagged only 88% is when she decided to take the service of a scribe.
She took commerce for her plus two. It was a 9th-grade student who appeared as a scribe for Preethu. She scored 96% and enrolled in Changanasherry NSS college for BCom. When she scored 90%, it was her classmates who told her about CA. She passed the foundation at the first attempt, without any training.
CA Classroom
She started enquiring about Alappuzha's CA institutes. And the ones she found were all on the second floor, which were all ruled out due to her condition. She searched a few institutes in Kochi but all had the same issue. Then she found what she was looking for at Palarivattom Logic Institute. When she informed them about her practical difficulty, she was told that they would conduct the classes on the ground floor.
Paolo Coelho's quote about the world conspiring to help you get what you wanted turned out to be true in her case. She shifted to Eroor. It was not easy at all. She had to study difficult problems that stretched to 10 pages and since she could not write them, Preethu would read them aloud. She had to work twice as hard as others to get competent marks and even more to top the exams.
Despite studying hard for the final exams, she found it difficult to get someone to scribe for her. They had a specification that the scribe should not be BCom pass. Due to Covid, it was difficult to get any college students. Preethu even thought she might not be able to appear for her exams. Thankfully, a few days before exams a friend helped her find a scribe. Time was the biggest challenge before her and therefore it can be said that she got no allowances for using a scribe.
Finally, the exam days got over and her results came last week. She had rewritten her fate. She had won. That was the day her parents saw her smile at them for the first time.
Only misgiving
In developed countries, though there is no cure for SMA, there are treatments available to help manage symptoms, reduce discomfort, and maintain quality of life for as long as possible. Spinraza (nusinersen) is a groundbreaking, disease-modifying treatment developed by Biogen for spinal muscular atrophy (SMA).
MMA Type-1 medicine falls in the life-saving medicine department and it is available through financial assistance. But to bring it to India will cost a lot of money. The medicine has the capacity to control the illness to an extent.
Preethu’s biggest concern is in how expensive these medicines are and how the Indian govt is not doing anything about it. She is a member of SMA cure foundation in Kerala which houses around 98 people with the same condition.
According to Preethu there are still a lot of people who have not yet realised that they are having SMA. Spinal muscular atrophy (SMA) most often affects babies and children and makes it hard for them to use their muscles. When your child has SMA, there is a breakdown of the nerve cells in the brain and spinal cord. The brain stops sending messages that control muscle movement. When that happens, your child's muscles get weak and shrink, and children can have trouble controlling head movement, sitting without help, and even walking. In some cases, they can have trouble swallowing and breathing as the disease gets worse. She is a volunteer of Mind Trust for differently-abled and is also taking online classes for them. For Preethu, who has always dreamed big, she is finally reaching that goal of being financially independent.