PRANJALI UDANSHIV (ARTIST)
A story of an Artist with a disorder called SMA – Spinal Muscular Atrophy
19-year-old Pranjali Prashant Udanshiv, is an incredible artist, as the pictures rightfully speak. She is passionate about putting her thoughts on paper and thinks that these pictures best describe her feelings. In a world where a lot of things still remain unanswered to her, Pranjali tries to find these answers using her paint brush.
These pictures however, fail to describe the struggle that Pranjali faces every day. She is suffering from a rare, debilitating, neuromuscular disorder called Spinal Muscular Atrophy (SMA). Suvarna, Pranjali’s mother says that Pranjali was her first child who was born full of health and hope. She met all her developmental milestones like rolling, neck holding, crawling until the age of 9 months. She could also stand using support. Post that, she started losing her abilities. The parents ran from pillar to post, but the doctors weren’t much aware of the condition in those days. They spent almost 2 years without a diagnosis. She was finally diagnosed at the age of 3 years after which they started with her regular physiotherapy.
Suvarna says that Pranjali was a very active and intelligent child and was very good in her studies. She used to draw beautiful pictures since her childhood days. She started going to a normal school where she was in good care of her teachers and caretakers who treated her very well. However, this was possible only till the age of 8 years. Being a grown-up child, it was becoming difficult to manage her in a normal school and the management suggested that she be moved to a school for special needs children. The mother, however, was reluctant as Pranjali was mentally very much fit though she had physical limitations. She took the tough decision of not sending her to any school. Those days were mentally very difficult for the family and finally her mother, who was a teacher, decided to home-school her. She was enrolled in a school where her mother’s friend helped her in all the ways she could.
At the age of 10, another storm struck the family. Pranjali suffered from severe cold and fever constantly in the months of December and January. SMA children are very prone to coughs and colds and a common cold can also get fatal for them. However, the parents weren’t aware about these facts. Due to unavailability of proper medical facilities, she was shifted to another city for better treatment. The next 48 hours were extremely critical for Pranjali and the family was losing hope. Many doctors began visiting her and most of them were just curious to know that how she survived through all these years. This further aggravated the pain of the family. But Pranjali was a fighter. Due to her courage and the prayers of her family, she started recovering after a week under the treatment of her Neurologist, Dr. Prasanna Kasegoankar, who is still treating her. In the following years, the family saw many ups and downs with regard to Pranjali’s health. She started to get frequently sick and sometimes would even stay in the hospital for more than 20 days. Hospital had become our second home, as Suvarna says.
Due to these difficulties, Pranjali started losing hope. But as a mother, Suvarna refused to give up. Soon Pranjali was in the 10th Grade and had to appear for her SSC exams. With all the courage and hard work, she appeared in the exams as an external student and to everyone’s surprise, succeeded with flying colours. It was a great pride for her family. She proved that through courage, perseverance and determination, one can achieve anything in life. She received appreciation from many people including her doctors. Soon, she succeeded in her HSC exams too. Along with studies, she continued with her hobbies, drawing, painting and also singing.
Pranjali faces a lot of difficulties in her daily life. Basic activities like swallowing and breathing also become difficult for her at times. She is totally dependent on others for each and every activity and is completely bedridden. Severe pneumonia has left her vulnerable to viral infections. She is very sensitive and doesn’t want to be dependent. This feeling of helplessness also pushed her into depression once. Suvarna says that it was very difficult to bring her out of this. They decided to take psychiatric treatment for this and it took nearly a year for her to recover.
Pranjali is a very positive person with positive energy which is very evident through her smile. Although she is suffering a lot, she wants live a good life, which is her right. Losing her best friends to SMA with each passing day becomes even more hurtful for her. She is very grateful to her doctors, Dr Pallavi Jadhav her physiotherapist who is guiding her constantly and always ready to help her out anytime, her paediatrician Dr Mahesh Sonar and his team who care a lot about her health and help her out whenever she needs. Pranjali wishes to thank all of them. She also wants to say a special thanks to Dr Varsha Patil, her psychiatrist who played a very important role in bringing her back to normal mental health. The family is hoping for the medicine soon so that they are blessed with her presence throughout their life.
Pranjali loves to paint , and she finds this a Therapy for her, which helps exercise her mind too.
Since Rare Diseases are not known and understood by many, the family and the network is very keen on spreading awareness. They are reaching out to the Indian Govt and Pharma companies, and also to International companies to help in bringing in research and medicines for this life threatening disorder.
Please visit the website – www.curesmaindia.org – which is a support and help group for persons with SMA, for more information and update for SMA
Narrated by: Suvarna Udanshiv
Edited by: Tahira Tahir
