Dear Supporters, 
With heavy hearts, we reach out to you to seek help for our loved ones, including my brave 3-year-old daughter, Chaaya Choudhary, and countless others battling Spinal Muscular Atrophy (SMA). This rare and devastating neuromuscular disease is a relentless challenge, not just for individuals but for entire families struggling to secure the life-saving treatments desperately needed for survival. 
 
Our Collective Struggle 
SMA is a severe genetic disorder that affects the motor neurons in the spinal cord, leading to progressive muscle weakness and atrophy. For fighters like Chaaya, each day is a testament to their courage as they face immense physical and emotional challenges. Unfortunately, access to effective treatments remains a distant dream for most of us. These treatments are extraordinarily rare, prohibitively expensive, and difficult to obtain in our country. 

 

 

Why we need your support 

Lack of accessible treatment – ​​The essential medicines and treatments needed for SMA are scarce and not adequately provided by the government, forcing us to seek expensive treatments abroad. However, Chaaya has not yet received any medicines.

Financial burden - one bottle of Evarisdi Resdiplam 80 ml costs 7 to 8 lakh rupees, treatment in India is prohibitive, and without government support, our ability to provide Chaaya with the necessary care is very severely weakened. Many parents in India like me turn to crowdfunding as a way to beg for their loved ones from tax payers

 

 

 

Bureaucratic delays - The process of registering with a centre of excellence for rare diseases takes months, sometimes after begging for their approval and help. Chaaya's profile remains unregistered on the official rare diseases portal https://rarediseases.mohfw.gov.in/ until December 14, 2024, after a year of no changes. The updated profile contains numerous errors, suggesting it was uploaded hastily without proper cross-checking. It appears they were in a rush to respond when I sought information through the Right to Information (RTI) Act. Bureaucratic delays hinder the process, making registration with a center of excellence for rare diseases slow, inefficient, and often requiring persistent effort. (My experience was deeply frustrating)

Centres of Excellence for rare diseases in India are not even equipped with the necessary facilities to monitor the current health status of patients like Chaaya. These centers must ensure that patients with SMA, like Chaaya, are called in at regular intervals for comprehensive evaluations—from physiotherapy to addressing each medical challenge they face. This will help in providing timely interventions and better management of their condition.

Awareness and Advocacy - There is a dire need to raise awareness about SMA and the challenges faced by affected families, If there was awareness, the three major medical institutions would be looking at Chaaya as what they consider a developmental delay!

Cure SMA India Teams is tirelessly fighting the legal battles to secure maximum benefits from the government for SMA patients. Their advocacy, teamwork, and unwavering spirit provide hope to SMA fighters and their families. This collective effort underlines the possibility that one day,

Cure SMA India Team's legal fight has played a pivotal role in advocating for SMA patients' rights. Their efforts have led to significant outcomes, The Delhi High Court issuing several directives to the central government to improve the treatment of rare diseases.

What We Can Learn From State Initiatives
Some states in India have shown that change is possible. Kerala and Goa have implemented rare disease support systems that provide essential medicines free of cost to affected patients.  Introducing a government scheme to ensure free access to life-saving treatments for rare diseases. These examples prove that with the right policies and commitment, we can build a system where children like Chaaya can access the care they need without financial ruin. We urge the central government to replicate such initiatives nationwide.

 

 

Spinal Muscular Atrophy (SMA) requires early intervention from Ministry of Health and Family Welfare to prevent irreversible disabilities. Delayed treatment leads to severe consequences, ultimately increasing the burden on the Department of Empowerment of Persons with Disabilities. We urge the government to prioritize timely intervention and provide comprehensive care for children affected by SMA to minimize long-term disability and associated societal costs.

 

 

 

Our request to the Indian government-

Immediate provision of essential medicines -Ensure availability and affordability of SMA treatments in all regions of India.

Financial assistance programs- Establish comprehensive financial assistance for families dealing with rare diseases like SMA, covering medical expenses, treatment, and related costs.

Streamlined approval processes- Make the approval process for treatment and support plans simpler and faster to ensure timely access to necessary care.

Increased awareness and research funding- Invest in awareness campaigns and each block or village level health service aware about seriousness of diseases, fund for research initiatives to better understand and combat neuromuscular diseases.

Dedicated support centres – each central of excellence for rare disease must have specialized service that provide holistic care, including medical treatment, counselling, and support services for affected families.

 

 

 

 

 

Why your signature matters -

By signing this petition, you stand in solidarity with Chaaya and countless other children in India struggling with rare diseases. Your support can amplify our voices, urging the Indian government to take immediate and meaningful action to provide the necessary support and resources. Together, we can create a compassionate and responsive healthcare system that prioritizes the lives of our most vulnerable citizens.

Join us-

Please sign this petition and share it within your networks to raise awareness and gain the support needed to make this important change happen. Each signature brings us one step closer to securing a future where no child has to suffer due to lack of proper medical care.

Thank you for your support,

Ajay Choudhary

Mail - ajayseppa14@gmail.com

 

 

 

 

You can help Chaaya

Sign the petition- Show your support by adding your name.

Share widely- Spread the word on social media, email, and in your communities.

Raise awareness- Educate others about spinal muscular atrophy and the challenges faced by affected families.

Contact representatives- Contact local and national government officials to advocate for change.

Together, we can make a difference and ensure no family has to face the struggles we are facing. Thank you for your compassion and support.

#curechaaya #savechaaya #Supportchaaya #FightagainstSMA #Healthcareforall #EndSMAinIndia

https://www.youtube.com/@ChaayaSMAFight

 

 

 

 

 

 

 

 

 

To Donate -

http://m-lp.co/ajaychou-1?utm_medium=native_message&utm_source=app