In memory of Aarav
The Aarav Amar Bajpayee Foundation for Children was established in memory of our son Aarav, born on October 1, 2021. He was born with the rare genetic condition of severe CPS1 deficiency, a type of proximal urea cycle disorder (PUCD). This is the rarest disorder of its kind statistically estimated to have affected only about 70,000 humans ever born.
Aarav was with us in this world for only a short time, but the happiness, love and sense of fulfillment he brought to our family were immeasurable. Like all parents, we had many dreams for his future. Among them was the hope that he would grow up to use his abilities and hard work to help others, reduce suffering, and make a positive difference in the world. His brief time with us gave us a deeper appreciation for life, love and the connections that endure beyond our physical existence.
Through the Foundation, we hope to carry forward some of the dreams we had for Aarav by creating opportunities, providing comfort, and supporting work that can make a lasting difference in the lives of others. The name Aarav means a calm musical note. It is our hope that his memory will continue to fill this world with comfort and happiness, just as peaceful music provides comfort and happiness to the mind.
Each year on Aarav’s birthday, October 1, we remember him and all the children who left this world too soon. His memory reminds us of the fragility of our time here, keeps us humble and grateful, and inspires us to cherish what we have while doing what we can to leave a little more good in the world.
For any families wanting to reach out regarding this or similar conditions, we are always available.
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Families helped stay close to their children during hospital stays
Five
Vulnerable children have received K-12 educational support
Two
Annual awards in the Department of Mechanical Engineering at MIT
Hospitality Homes has been the #1 reason why we are able to fly to Boston for Matteo, we spend so much time and money getting there (that we don’t have sometimes). We are so grateful for Hospitality Homes’ help, and the kind people that open their homes for us. Without you a lot of our trips may not be possible.
Our Work
The Aarav Foundation supports initiatives in children’s welfare and education, families facing serious childhood illness, young people working to create positive societal impact, and research directed toward improving human lives and the health of our planet.
Supporting Families During Medical Treatment
Multipurpose Family Room at NICU of Boston Children’s Hospital: Our own experience with Aarav gave us an intimate understanding of what a family goes through when a child is seriously ill. Aarav’s case was so severe and rare due to a previously unknown pathogenic genetic mutation that it left his medical team with very limited information and treatment options. We spent long and intense time at the Boston Children’s Hospital’s Neonatal Intensive Care Unit. A very able and caring multi-specialty team of doctors and nurses led by Dr. Emily Whitesel took care of Aarav. We also witnessed the pain of several other families, and at times felt optimistic reading about success stories of infants who graduated from the NICU after several months to even over a year stay. After Aarav’s passing, as we walked out of the NICU one final time, we only prayed that no parent should have the need to come to this place.
In 2025, we dedicated a multipurpose family room in the same NICU at Boston Children’s Hospital. The room gives families a private place to meet with doctors and nurses, or simply a quiet space to themselves during some of the most challenging moments of their lives—much like those our own family experienced in 2021. We are now working with members of Aarav’s clinical care team and researchers at BCH to document his case alongside other rare cases encountered at the hospital over several decades. This work aims to identify challenges and gaps in diagnosis and treatment, document the clinical lessons learned, and help improve recognition and management of similar cases in the future. We are also working to raise awareness of the early signs of proximal urea cycle disorders in infants, where timely recognition and diagnosis can be critical.
Accommodation for families in need: For families who must travel away from home for treatment while also facing financial constraints, the burden can be greater still. Beginning in 2023, the Foundation supported Hospitality Homes, which provides free or low-cost accommodation to families with limited means who travel to Boston while their children receive medical treatment. With this effort, the Foundation so far has supported about 40 families traveling from across the United States as well as internationally. Their children have received care across a wide range of specialties, including oncology, cardiology, neurology, orthopedics, gastroenterology and urology.
What has been particularly meaningful to us is seeing what this support means for individual families. Parents have described being able to remain together during long hospitalizations, care for siblings while a child is in the hospital and return to Boston for surgeries and follow-up care without the additional worry of finding and paying for a place to stay.
My daughter was in the hospital for over a month [...] your program gave us the opportunity to be together as a family. The program really changed our lives in bringing us together during our most difficult times.
Hospitality Homes has been a God-send in helping us find affordable housing so we can focus on Kayla’s needs and not stress about finances on top of everything.
Children’s Welfare & Education
K-12 education fund: The Foundation partners with World’s Children, an organization supporting orphaned and vulnerable children in India. The Foundation helped establish an infant care room and provide transportation used to rescue abandoned infants. We also began supporting the education of orphaned children from tribal backgrounds through high school, with the goal of adding support for another child whenever possible.
To date, five children have received K-12 educational support through the program. One of the first students supported by the Foundation went on to complete a vocational degree in computers and is now earning independently. For us, these efforts represent something simple but fundamental: giving children the care, education and opportunity they need to build their own futures.
Bhaktivedanta Gurukul & International School (BGIS): BGIS was founded in 1975 in Vrindavan to combine modern academic education with the traditional gurukul approach emphasizing character, spiritual values, service and the holistic development of children. Aarav foundation recently partnered with the school to support both infrastructure as well as student scholarships. We are supporting the building of a Maker Space on campus which is envisioned to be an interactive lab and building space for teaching STEM to Grades 6-12. The foundation has also created 3 annual scholarships which will help cover tuition for students from low-income backgrounds.
I am learning a lot every day, your kindness has been a big help in allowing me to focus on my studies and do my best.
Thank you for your kind support in my studies, your generosity encourages me to work hard and do my best in learning new things. I always pay attention in class and try to improve my knowledge every day.
Encouraging Achievement & Societal Impact
Student Awards:
In 2022, the Foundation endowed two annual awards in the Department of Mechanical Engineering at MIT.
The Aarav Amar Bajpayee Memorial Prize for Undergraduate Achievement recognizes outstanding academic work together with contributions to student life and extracurricular engagement.
The Aarav Amar Bajpayee Memorial Prize for Graduate Student Impact recognizes research with societal impact related to the health of the planet or global energy sustainability.
Through these awards, we hope to encourage young people not only to excel in their chosen fields, but also to use their abilities to contribute to the world around them.
Recently, the foundation partnered with Rishihood University to establish 3 annual student awards. Located in Sonipat, India, Rishihood is a new private university focused on science, technology, mental health and public policy, of which Aarav’s parents are members of the founding board. The Aarav Amar Bajpayee Awards will recognize graduating students who rank first in their class by cumulative grade point average (CGPA). Each recipient will receive a gold medal and an award of ₹1.5 lakh.
About CPS-1 Deficiency
Aarav had a severe proximal urea cycle disorder (pUCD) called carbamoyl phosphate synthetase 1 (CPS1) deficiency. CPS1 is a liver enzyme needed for the first step of the urea cycle, which converts toxic ammonia produced during protein breakdown into urea that the body can eliminate. When CPS1 does not function adequately, ammonia can rise rapidly in the blood. In newborns, severe hyperammonemia can cause brain injury and become life-threatening within days.
Treatment focuses on lowering ammonia as quickly as possible and preventing it from building up again. During a crisis, doctors may use dialysis to remove ammonia from the blood, provide calories to limit the body’s breakdown of its own proteins, and give nitrogen-scavenging medicines such as sodium benzoate or phenylacetate. Longer-term care can include carefully managed dietary protein, nutritional supplements, and scavenger medicines. Liver transplantation can correct the metabolic defect for some children who survive to receive one. These treatments can help, but they cannot always overcome the most severe disease. Aarav’s condition was severe, and despite treatment, he could not be saved.
New approaches offer hope for the future. In 2025, researchers at Children’s Hospital of Philadelphia and Penn Medicine gave an infant with severe CPS1 deficiency a personalized CRISPR-based treatment designed to edit his specific genetic variant in liver cells. His early progress was encouraging, and CHOP reported on his progress one year after treatment. This remains an experimental approach: longer follow-up and further research are needed to establish its safety, durability, and availability to other children. For families affected by rare conditions like Aarav’s, it shows what may become possible when research advances toward treatments for the underlying cause.
Families affected by CPS1 deficiency or another urea cycle disorder are welcome to reach out to us for support, help understanding the science and treatment options, or guidance toward relevant specialists and resources. Aarav’s mother, a professor of bioengineering, is also glad to help families make sense of the research.
Carrying Aarav’s Memory Forward
The Foundation began with a deeply personal experience, but its purpose is ultimately about creating something positive: helping a child receive an education, easing the burden on a family caring for a sick child, encouraging a young person whose work may benefit society, or giving a promising idea the opportunity to develop.
Aarav’s time with us in this world was extraordinarily brief, but the love, happiness and connection he brought into our lives are enduring. Through these efforts, we hope that some of that love can continue outward into the world.
Each year on Aarav’s birthday, October 1, we remember him and all the children who left this world too soon. His memory reminds us of the fragility of our time here, keeps us humble and grateful, and inspires us to cherish what we have while doing what we can to leave a little more good in the world.