How can you help?
Our Story
For every couple, embarking the parenting journey is a beautiful and special feeling that draws no parallel. However, Maurya, our son (Now 12 years old in 2024), had developmental delays with both his walking and speech, during the toddler stage. Doctors diagnosed Maurya (at 2.5 years in 2014), with cerebral palsy symptomatically as Brain MRI was normal. Basic Genetic testing revealed no definite findings.
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We continued with Physical, Occupational, Speech, Aquatic and Equine therapies. We saw little to no improvement. Our relentless quest to find his diagnosis continued. Maurya was diagnosed with Syringomyelia when he was 4 years old (in 2016) concluding that Cerebral Palsy was a misdiagnosis. During the same year in 2016, he was diagnosed with Tethered cord but it was ruled out too after second and third opinions. Cerebrospinal Fluid (CSF) flow study was performed to examine the uniformity of CSF fluid. The study had negative results. Maurya’s lumbar was punctured for fluid study to evaluate dystonia and it was negative. At this time, advanced genetic testing was suggested. In May 2019, only a month after welcoming our second child, our daughter, Disha, we received the Advanced genetic testing results that revealed the devastating diagnosis of SPG4 Hereditary Spastic Paraplegia. Typically a hereditary disease, however in Maurya’s case, the mutations were “de novo”, meaning the gene randomly mutates during the development of embryo and is not inherited from a parent. Since then, we are nursing our wounds with hope while we continue to fight to find a cure for this rare neurologic disease.
Join Us in Making a Positive Impact Together
Our Mission
The Maurya Koduri Foundation’s mission is to increase awareness and to fund research to develop a treatment for Maurya and others with de novo Hereditary Spastic Paraplegia SPG4. We are working with top scientists and doctors, and we are collaborating with other foundations to forge paths to treat all others impacted by HSP.
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100% of the donations will go directly to support research aimed at finding a Cure.
Meet the Parents
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The birth of our son, Maurya was a water shedding moment for us. We vividly recall and rejoiced every little moment of his first years of life from infancy to a toddler. Like every parent, we cherished his little milestones during the first year until we were hit with the milestone delays, especially walking. We identified this as a red flag but a part of us made us think that this was only a passing cloud. When Maurya was 2.5 years old, even though the MRI scan of his brain was normal, we heard our doctors saying, I am sorry but your child will never be able to walk due to the symptoms but don't lose hope. When Maurya was 4 years old, we heard our doctors saying, I am sorry your child’s ability to speak is being impaired but we don't know the cause yet. When Maurya was between 5-7 years old, spine surgeries and hip surgeries were performed. During that time, we heard the doctors say, Im sorry these are only corrective surgeries and the actual diagnosis is still unknown and we don't know if your child will ever be able to walk and talk normally.
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We were recuperating from challenges after challenges during the entire diagnosis discovery process but with the diagnostic news of de novo HSP SPG4 on May 2019, we never felt a pain so soul crushing. Even though we were devastated inside that our dreams for him felt like they were being stolen, we looked at our handsome boy in that very moment who radiates joy and finds fun in all the situations and said to ourselves- "we are going to fight this menace and since then our mission is to increase awareness of SPG4 Hereditary Spastic Paraplegia and fund research to find a cure for SPG4 Hereditary Spastic Paraplegia."
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We did what we can until this point and raised over $25,000 since 2020 through Facebook fundraisers but that is not enough so we decided to establish this non profit foundation and with your help, we fully believe we can make a difference in Maurya's life and for all those affected by this disease.
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Vamsi is a professional photographer and is offering Photography Services in and around Naperville area. Please check the link below
Vamsi is offering Speaking services in return for your donation to Maurya Koduri Foundation. Please check the link below
My gene is mutated, My spirit isn't
Meet Maurya
Maurya is a tough, sweet, determined, curious, amiable and a funny 12 year old boy. Maurya endured 12 years of doctors, tests, therapies, diagnoses and misdiagnoses and surgeries, all with a beautiful smile. He plays piano well, is excited to build legos, loves math and science, plays video games with great zeal and is absolutely interested in Animals and plants. He religiously follows NBA/ NFL games and generally likes watching and playing (to the best of his ability) all kinds of sports. Maurya plays wheelchair basketball and loves being in water and to swim with his dad's support. Most importantly, you will always find a smile on Maurya’s face.
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Maurya primarily uses a wheelchair for navigation at home and school. He used a reverse walker until 2020 (until he was 8 years) but with increased tightness (spasticity) in his legs, a gait trainer was recommended. He primarily uses a gait trainer at therapy twice a week. He also tries to navigate via Mobile Stander.
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Maurya had speech delays all along but since last three years, it's significantly affecting his ability to speak clearly with feeble voice. However, he works extremely hard in Speech therapies and uses the speech repair techniques in making the listeners understand. With little motivation and push, Maurya writes well and uses this technique to communicate when he is hit with speech delays. He spends number of hours a week working hard during the Physical, occupational and speech therapies. Maurya's quality of life is decreasing though he is working hard to the best of his abilities. He is a happy child and is hopeful that scientists will find a Cure for HSP soon.
Maurya's School going routine on a special bus
Maurya on a stander on wheels. He can currently do around 20 minutes
Maurya with his coach during a Wheelchair Basketball Session
Maurya during his regular Physical Therapy sessions
Maurya during an intensive therapy at Shriners Hospital, Chicago
Maurya working hard at home while undergoing serial casting- (non-invasive approach to reduce the muscle tightness)
How can you help?
The costs for the research for human trials can be burgeoning. With HSP SPG4 being so rare, there is very little funding from the government and there is very less incentive for major organizations to fund research. We will have to rely on humanity- generous donors, friends, family, and the HSP SPG4 community. This is a very uncomfortable position for our family. We can simply stay quiet and watch the show but we have decided to fight for Maurya and others afflicted with HSP, whatever it takes. How can you help apart from monetary help?
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1.Pray- We believe in positive vibes and prayers can fulfil this. Please pray for Maurya to give him strength while this disease is progressive. Pray for the doctors who are constantly working on their studies so they will get successful results with animal trials and move quickly to human trials.
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2. Educate- I read somewhere ' Kindness is the new cool' It is so true in the current world we live in. Please teach your children about kindness and how people in this world come in all different shapes, colors, sizes and with different abilities. Maurya and other kids who are in wheelchair may look different from other children of their age, but they share so many similarities and have exceptional abilities and they deserve to be celebrated as they are. Please teach them to accept as they are with little more patience and please teach them to encourage to be their friends.
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3. Share- I am sure you understand the power of social media in reaching a wider population. The more people we reach, the better funds we can raise to help scientists to continue their research and ultimately find CURE.
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4. DONATE- We would greatly appreciate donations of any amount to Maurya Koduri Foundation. The research and Cure is not just for Maurya but for several people affected with this disease. You can donate via this website (Donate page or Click on the Donate button) or if you prefer to donate via a check, please contact us for details. Your donation is 100% tax deductible and 100% of your donation will be directed to Hereditary Spastic Paraplegia research.