Seba Salam

After the lights in my bedroom went off last night, I lay awake for a long time contemplating the different shades of darkness that enveloped me. I guess darkness in itself is a hue. And adding more darkness or light into it creates countless unique shades of it.

I live with a constant feeling that I'm a burden on everyone I love. And I guess that feeling is quite common for most persons living with disabilities. But the shades of it vary at each instance. At times, it's pitch-black, leaving you stuck with an assumption that there could possibly be nothing left to come up with, but sooner it can be also possible that you realise it changes shades again.

Today is Rare Disease Day. There have been developments in innovating treatments for different types of rare diseases during these several years. But I understand that still there are many people who don't have a clear diagnosis and also a vast majority of such diseases that have no approved treatments so far. Even for the diseases which really have approved medicines, those medicines are priced beyond reach for most people.

Btw, for any person living with a rare disease or any other type of disability, affordability of treatments can be merely one of the thousand challenges they face in their daily lives. There can be this heavy emotional baggage too that builds up over the time you keep growing up realising that you have been failing in terms of pursuing your education and dreams or being able to do a job or not being a burden on anyone, because of a body that keeps failing you.

I used to hate my body during my adolescence. I used to feel that my body always limits and stifles my soul. It was only after my teenage years I realised and started accepting and appreciating how much even my body has been suffering and fighting alongside me, just to keep me breathing.

There have been times when I have felt I'm so irreparably broken. But then there were also little beams of light that occasionally poured in to wane the darkness.

I keep hoping that today, tomorrow and the days and years and eons that follow would succeed in pouring in more and more light to the lives of every individual suffering in this world.

I am so incredibly honored to share about this feature in the February first edition of , which dives deep into our ongoing legal battle for affordable and accessible SMA treatment. This isn't just my story; it’s the story of every person with SMA and their families fighting for the right to breathe, move, and live. Huge thanks to the writer for highlighting this cause, and to the photographer Shyam Babu for capturing these beautiful shots!

❤️

🎄I had a truly memorable Christmas this year!✨ I felt so honored to be visited by Sister Charles (Manager of St. Xavier's College for Women, Aluva), Dr. Milon Franz (the Principal), and Dr. Ninu Rose (Head of the Commerce Department) 🥰

In October, I had the opportunity to meet with the Kerala State Commissioner for Persons with Disabilities, Dr. P. T. Baburaj. He expressed his appreciation for my efforts in making Spinal Muscular Atrophy (SMA) treatments more affordable and accessible.

He accepted my request to the State Government to declare free treatment for all SMA patients in Kerala, and assured me that the Commissionerate would take the necessary steps to make it possible soon.

As a token of appreciation from the Kothamangalam Peace Valley, I was honoured with a golden shawl and a memento. The ceremony, held at my house, was attended by Dr. Baburaj and his wife Mrs. Reshmi, as well as representatives from Peace Valley, including Mr. Farooq Karumakkattu, Mr. Rajeev Palluruthy, Mr. Shamsu Libas, Mr. Sabith Umar, Thanal palliative members, among others. My family members were also present.

I hope that the collective efforts of society and our legal and administrative systems will ensure everyone's right to live a healthy life and to receive timely medical treatment and medicines.