Please reach us at keyafightssma@gmail.com, if you cannot find an answer to your question.
Name : Baby Keya Hatkar
Age / Gender : 11 years old, Female
Physical Condition : Wheelchair bound sitter with prosthetic supports, non-ambulatory child from birth. Breathing issues owing to low lung function. Severe Kyphoscoliosis of her spine, developed over the past years. Has recently undergone surgical correction of her spine, Still needs hip and knee surgeries. Suffers from severe osteoporosis, kidney stones and obstructive sleep apnea.
Keya's Parent : Monisha Hatkar ( Mother, Single Parent )
Employment Status of Parent : BArch (Mumbai University). Worked for the past 20 years and had to proceed on a sabbatical in 2019, owing to Keya’s deteriorating condition and need for surgeries . No financial or non-financial support from ex-husband’s family.
Current Location : Relocated to Mumbai from Visakhapatnam (native place) to further Keya’s treatment.
Siblings : Keya has a 15 year old elder sister who is also her best friend and is currently studying.
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, causing severe body pain, dislocated right hip, frozen knees and hips (contractures), kidney stones, High degree of osteoporosis & obstructive lung disease ( sleep apnea), difficulty in night breathing and drooling.
TREATMENT :
SMA : Risdiplam (Also known as Evrysdi) : USFDA drug by Roche Pharma Prescribed 30 bottles / year, daily oral dose @6.6 ml for lifetime. The medication has been initiated on 18th Jan 2022. Continuity depends on fund availability.
Spine Correction Surgery, Hip and Knee correction surgery : Spine surgery completed successfully , recovery with physiotherapy in progress. Hips and knees need to be addressed yet.
Pre + Post Surgery : Nutritional support to increase bone strength + Physiotherapy (Limb + Chest + Aqua) . Post Surgery rehab has been commenced.
Bipap Support : Non intravenous ventilator to increase lung function. Initiated.
Hip and Knee Surgeries : Scheduled in few months.
Kindly refer to PROGRESS section on the website.
Kindly refer to PROGRESS section on the website.
There are mainly 4 ways to help Keya and her family financially during this phase of crowdfunding:
1. You can make individual donations to the DIY campaigns started by Monisha ( Mother ), Family and Friends. Please go to page DONATE TO KEYA to find all the fundraiser links
2. Corporates can come forward with CSR donations to NGOs like Impact Foundation and Milaap Foundation, who have agreed to accept funds on behalf of Keya to support her treatment and waive off all commissions.
3. Donate medical equipment , or pay for other supporting medical expenses directly.
4. Share Keya's fundraiser within your social circles and encourage your friends and family to contribute to the fund.
No donation is big or small and every drop of support matters for Keya.
Indian tax benefits available for the donated amount from the crowdfunding platform.
All the donation links can also be found on this website. https://keyafightssma.in/donate
Do spread the website link to help others know about Keya's story and reach out to help her.
For bank transfers within eligible limits to ensure it does not attract Income Tax deductions, kindly contact the Keya's Mother on the CONTACT US page. GPay and Paytm options are open for the same on 9108052332.
Impact Foundation and Milaap Foundation, both NGO's are accepting funds donated for Keya's Treatment against Tax exemption certificates issued for the CSR Funds . Kindly contact us for more details or WA on +91-9108052332 to speak to Keya's Mother, Monisha.
Yes, the crowdfunding platforms charge a platform fee which vary and some have totally waived off their fees for Keya's campaign. Feel free to check with Keya's Mother, Monisha on WA +91-9108052332 .
NO, the same has been waived for Keya.
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In spite of her SMA , Keya believes I M POSSIBLE!
13 year old Keya is a national award winning author of two best sellers, an artist, coder, motivational speaker, YouTuber, podcaster and singer.
Keya's book links:
DANCING ON MY WHEELS & I M POSSIBLE!
Don't miss out Keya's recently launched new podcast series :
Keya's life-saving SMA treatment costs INR 80 lacs / year for life. Her mother needs your support to access this treatment. Keya has been receiving treatment since Jan 2022 thanks to all her donors.