MALAYSIA: Nisshaa Muniandy, a determined 27-year-old woman living with dystonia and epilepsy for the past two decades, has reached out to the community in a heartfelt plea for financial assistance to undergo a life-changing medical procedure.
To her surprise and overwhelming joy, the response from the community has been nothing short of remarkable.
Within just three weeks, she not only met her initial goal of RM 68,000 (approximately $15,034), but the donations have far exceeded expectations, with the fund for Nisshaa’s surgery reaching RM 108,188 ($23,931) as of Thursday (27 Jul), and public support continues to pour in.
Nisshaa was diagnosed with dystonia at the tender age of six, leading her to face numerous challenges as this neurological disorder causes involuntary muscle contractions that disrupt her daily life and impede her pursuit of a fulfilling career.
Over the years, Nisshaa’s dystonia has progressively affected different parts of her body, starting with her left arm, later impacting her neck and back muscles, and now spreading to her legs.
Enduring the agonizing progression of dystonia
The disorder has resulted in two instances of being bedridden, at the ages of 22 and 25. Despite being on medication for the past decade, Nisshaa continues to battle chronic pain, which has limited her ability to work full-time.
Presently, she works as a part-time teacher, earning a modest RM400 per month, solely dedicated to her physiotherapy sessions to alleviate muscle pain.
In June this year, Nisshaa’s doctor informed her about the potential benefits of Deep Brain Stimulation (DBS) surgery.
This minimally invasive procedure involves implanting electrodes in her brain and is expected to alleviate 50% of her pain through the use of a pacemaker-like device placed in her upper chest.
These electrodes will emit electrical signals targeting specific brain regions responsible for controlling movement, potentially reducing the involuntary muscle contractions that have plagued her life.
However, the cost of the DBS surgery is substantial, amounting to RM65,000, encompassing the expenses for the implant, hospitalization, and surgical procedures.
The DBS implant alone accounts for RM50,000, while the estimated cost for hospitalization and surgery is RM15,000.
Due to the absence of personal insurance, Nisshaa had to turn to the support of the public, seeking help through social media earlier this month.
Despite her physical challenges, Nisshaa remains resilient in her pursuit of education and successfully completed her Master’s in English Language Studies in 2022.
Nevertheless, the debilitating impact of dystonia prevents her from engaging in full-time employment.
An ardent lover of arts and literature
Nisshaa’s love for arts and literature has been an essential source of solace, with writing poems that reflect her physical and emotional journey becoming an integral part of her life since the age of 21.
Recently, Nisshaa was featured in an interview with a prominent Malaysian media outlet, Free Malaysia Today.
In the interview, she shared how her passion for writing poetry about her struggles with dystonia has been a source of comfort and expression, allowing her to find strength and happiness despite her condition.
“If you disable order you cannot move anywhere, how do you find express yourself? I’m lucky I found writing”
“I realized it gave me so much happiness they with mem and I’m 27 I write so much poetry and I hope to publish them one day. ”
Looking ahead, Nisshaa plans to utilize any excess funds raised to support her post-surgery recovery, understanding the importance of being prepared for any uncertainties related to her body’s condition.
These funds will be allocated towards essential components of her post-operative care, including supplements, vitamins, and living expenses.
Nisshaa is deeply grateful for any assistance offered and understands that sharing her fundraiser with others is just as valuable.