how can WE support?

Name : Keya Hatkar  

Age / Gender : 13 years old, Female  

Physical Condition : Wheelchair bound sitter with prosthetic supports,  non-ambulatory child from birth. Breathing issues owing to low lung function. Has recently undergone surgical correction of her spine for kyphoscoliosis. Needs hip and knee surgeries owing to severe contractures. Suffers from  osteoporosis, kidney stones and obstructive sleep apnea.  

DIAGNOSIS:

Spinal Muscular Atrophy (SMA Type 2) at the age of 10 months & currently (age of 11 years) diagnosed with severe Kyphoscoliosis (cobb angle of 73 degrees) in 2019.

TREATMENT UPDATE (June 2024) :

SMA : Risdiplam (Evrysdi) : USFDA drug by Roche Pharma Prescribed 30 bottles / year, daily oral dose for lifetime. The medication has been given to Keya from 18th of Jan 2022 till June 2024 and suspended owing to shortage of funds for both drug and the pending Hip and knee surgeries. 

Spine Correction Surgery :   Spine surgery completed successfully , recovery with physiotherapy in progress. 

Hip and Knee correction surgery : Evaluation and preliminary process initiated.   

After having fundraised through annual DIY Campaigns for 2 consecutive years, we are now seeking only Government and CSR support to fund Keya's treatment along with other SMA families in India as part of our I M Possible & SMAART initiative.  

Several SMA families in India including ours were given the only option to crowdfund for the high end SMA treatments for our children using crowdfunding platforms. Having attempted the same, we have realised that this method has low to nil success rates  owing to the increasing number of cases  coming forward in India. Moreover the treatment for SMA with the drug Risdiplam is for lifelong, making this an unsustainable solutions for families who are already dealing with their ailing children, unless we get strong support from the Health Ministry both at Central and State levels and also Corporates to support this as a healthcare subject that has the capacity to save lacs of lives in India.

Hence we plead to the Government of India  and the Corporates to kindly come forward to support the life saving treatments of our children in the Country and help spread awareness on prevention of such rare genetic disorders by adoption of a mandatory genetic test prior to conception of children. 

Thanks to a few Corporates we have been able to raise funds as a community. We are hoping many more Corporates and Government will come forward in days to come and support this cause to save lives and the SMA families from the misery of seeing their children gradually slip away to their silent , suffering - laden ends. 

Kindly contact us for more details on  i.m.possibleandsmaart@gmail.com