15 Stories for 15 Years: Meet Savitha, Ajay and Anakha
As we celebrate 15 years of MitoCanada, we’re sharing the inspiring stories of individuals who make this community so special. Today, we highlight Savitha, Ajay and their daughter, Anakha — a resilient, determined, and joyful 10-year-old who is defying expectations every day.
Anakha’s journey began like any other. “She had an uncomplicated birth, and for nine months, everything seemed fine,” Savitha recalls. But after a flight, Anakha began losing all the skills she had developed — within six weeks, she could no longer crawl, babble, or even hold up her head.
Doctors at SickKids in Toronto suspected mitochondrial disease but told her parents there was no hope. “They told us to go home, make her comfortable, and prepare for the imminent worst,” Savitha says. But Anakha’s mother saw something else — signs of healing. “Magically, within a month of her initial regression, Anakha’s eyes started tracking light again and her fists slowly unclenched,” says Savitha. “Her first medical team did not believe me, and decided they were dealing with a desperate mother, looking for any sign of hope. But I saw the signs of healing and refused to give up on Anakha.”
Determined to fight for Anakha’s future, Savitha sought out every resource she could find. She connected with MitoCanada and sent Anakha’s dad, Ajay, to attend an event, where he connected with other mito families. She learned about Dr. Tarnopolsky and the latest research on mitochondrial disease. She advocated for Anakha to start on the mito cocktail before receiving an official genetic diagnosis and built a care strategy that prioritized movement, nutrition, rest, and avoiding infections. “Our family started living by the principles that I believe ultimately saved Anakha’s life – avoid stressors, avoid infection, emphasize exercise and movement, ensure she eats and drinks properly, protect sleep, and rest,” says Savitha. “Our family was sanitizing and masking in public years before the COVID-19 pandemic.”
Against all odds, Anakha recovered skills doctors said she never would.
Now 10 years old, Anakha is thriving. “She has regained some of her vision, uses a manual wheelchair, and is a wickedly funny and intelligent fifth-grader who loves musicals, blind bags (surprise toys), reading horror novels, swimming, cheerleading, spas, and dogs,” says Savitha. Her genetic condition, multiple mitochondrial dysfunction syndrome type 3 (MMDS3), also known as IBA57 deficiency, is ultra-rare — at the time of her diagnosis, only three cases had been reported worldwide.
Today, through literature reviews and social media, Savitha has tracked about 70 children globally with the same condition, some of whom have followed similar journeys of loss and recovery. “Currently, we’re in contact with three other families: a young boy in Serbia, a young man in New York, and a young woman in Norway who is a lawyer!” says Savitha. “These families experienced the same initial regression of skills as infants, but the children slowly regained many of their skills, through therapy, hard work, parental determination, and time. I’ve also been in touch with three families who lost their children in infancy. IBA57 deficiency is a spectrum.”
Anakha has faced naysayers and disbelievers her entire life. “Whether it’s the doctor who refused to believe she was tracking light again and refused to refer Anakha to ophthalmology (Anakha went from a 1 to an 8.5 out of 10 on the Cortical Visual Impairment scale, 10 being normal vision), the speech-language therapist who told us Anakha could not understand us and would never be capable of expressive language (she was wrong and apologized to us – Anakha is incredibly verbose and loves to sing and act!), or the educators who struggle with presuming competence in the face of disability (Anakha is incredibly intelligent, and when her IEP accommodations are appropriately administered, she can show that to the world!), living life with disabilities and a life-threatening illness is always going to be a fight,” says Savitha.
Savitha and her family’s journey with MitoCanada has been one of connection and support. “When we first started our journey, resources in Canada were so limited,” she says. “But within a few years, MitoCanada grew exponentially — providing education, raising awareness, fundraising, and connecting families like ours so we didn’t feel so alone.”
Savitha now plays an active role in the community, participating in the annual Walk N’ Roll 4 Mito and encouraging her family and friends to get involved. Ajay even sits on MitoCanada’s mitoScholars committee, helping to support students impacted by mito.
Savitha’s message to the MitoCommunity? “Mitochondrial disease is a tough, multi-system, complex disorder,” says Savitha. “We, whether adult patients or caregivers, are required to juggle multiple health specialists, therapies, and conflicting advice, all while dealing with exhaustion, pain, and grief. This is a tough gig. But what I want the MitoCommunity to remember is to always keep fighting. There is no guarantee of any sort of outcome, but we must always try, and fight for ourselves, and fight for our children. Stay connected, don’t be afraid to reach out for help, and never, ever, give up.”
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