Social Impact Heroes: How Minaxi Khalasi is raising awareness and funds to help people with…

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Social Impact Heroes: How Minaxi Khalasi is raising awareness and funds to help people with cystinosis

Not all diseases are visible. They aren’t always sick. They wanted to be treated like everyone else. Their disease does not define them. Just because they look healthy, doesn’t mean they are

As a part of our “Unstoppable” series, I had the pleasure of interviewing Minaxi Khalasi, a mother, caregiver and advocate for her son, Aarav, who lives with cystinosis, a rare, genetic and incurable disease that affects 2,000 patients around the world. She and her husband, Mukund, established Aarav’s Time to Shine, a foundation that raises awareness and money for the disease. Cystinosis is characterized by accumulation of the amino acid cystine (a building block of proteins). In people with cystinosis, cystine gets trapped inside the cells. Because of this defect, excess cystine damages cells and often forms crystals that can build up and cause organ and tissue damage, leading to early cell death. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and the brain. Cystinosis is progressive, meaning it gets worse over time and damage to cells cannot be undone, but regular treatment aims to slow down damage to the body by reducing cystine buildup in cells. On Saturday, December 28th over 160 people gathered at The Sutter Club in Sacramento, CA for the inaugural “Grand Gala” fundraiser and silent auction for Aarav’s Time to Shine. In honor of Aarav Khalasi, Aarav’s Time to Shine partnered with the Cystinosis Research Foundation (CRF) to raise awareness and funds to search for better treatments and hopefully one day find a cure for cystinosis. The guests were educated on the mission of the CRF and the most recent FDA approved clinical trials for a stem cell and gene therapy treatment for cystinosis funded by the CRF. The Khalasi family shared the importance of their foundation partnering with the CRF and how impactful it will be to have Aarav’s Time to Shine join in helping find a cure.

Thank you so much for doing this with us! What is your “backstory”?

On December 29th, 2014 our family welcomed our son Aarav Khalasi. Aarav quickly began growing and hitting his milestones as most babies do, but at about 9 months we noticed his lack of interest and difficulty with eating solid foods. Our initial reaction was not to worry and believed he was simply delayed in reaching this milestone, but at the same time Aarav was not gaining enough weight and did not want to stand. The issues were addressed with his pediatrician at his one-year checkup and the doctor ordered a series of labs and blood tests. The following day we were asked to return to have the same labs redone as well as x-rays. Before we even got back to our car, we received a call from the pediatrician saying Aarav’s electrolytes were extremely low and that we should have him admitted into the hospital immediately. On the first night in the hospital, the attending physician told us they suspected Aarav may have cystinosis. At the time, we had no idea what cystinosis was, so we frantically searched the internet for any information we could find. Our hearts broke as we began to learn more since we were not ready to accept cystinosis as a diagnosis and were hopeful for a different outcome. As the days went by, new medications were added and countless labs were drawn to help balance his electrolytes, cystine levels and personalize his treatment plan. After one month of hospitalization, the final results came and Aarav was officially diagnosed with cystinosis. During the stay in the hospital, daily lab draws and crazy medication routines became a part of our new normal. Aarav’s first surgery also took place, which placed a gastric tube in his belly to assist in giving him more than 20 daily syringes (which included medication and extra nutrients due to a lack of interest in food.) Aarav is closely followed by many specialists and has come a long way. We as a family have adapted to this new normal and Aarav has become very accepting of his medications, eye drops, and labs. Even though with a rare disease, like cystinosis, your new normal can change regularly, we consider ourselves lucky to be blessed that after all this our son still smiles and acts like your average 5-year-old boy.

Can you share the story of how you discovered that Aarav was ill?

We discovered Aarav was sick due to his low electrolytes. At first, he became incredibly ill from his medications because he had to take so many in order to be stable, but now Aarav has overcome that by building a tolerance over the years. We are always amazed by our son’s strength as he has learned at a very young age how to be a self-advocate. Aarav knows when he is not well to the point where he will step aside and take a break. He has learned how to push medications in his g-tube. He doesn’t cry or even flinch for his blood draws. As parents, we knew he wouldn’t let his cystinosis stop him and we were going to support him in every way we could.

Can you tell us about the accomplishments that Aarav has been able to make despite his limitations ?

Aarav can live a fairly normal life since he is well aware of the limitations around his disease. We have been able to maintain his electrolytes by being punctual with his medications. His labs have been pretty stable for the last two years and we were able to accomplish this by doing our part as parents. Aarav gets to sleep throughout the night, but that doesn’t mean we do. He still requires medications at all hours and his g-tube allows us to give him them as he is sleeping.

What advice would you give to other people who have disabilities or limitations?

Aarav does not let his disease define him. He makes sure his cystinosis doesn’t stop him but knows that it is okay to share and embrace your story. At the end of the day it is a big part of his life. Plus, none of us can achieve success without some help along the way.

None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?

Aarav’s entire medical team does a fantastic job of making sure he is followed closely. He is blessed to have a team who does the extra work to learn more about a disease that is so rare. Also, the Cystinosis Research Foundation, who has supported research and clinical trials so those affected by cystinosis can have a better life.

Can you describe how you or your fundraising is making a significant social impact?

Aarav’s first fundraising gala was important to our family because the goal was to raise awareness and money for research. We learned that even within our community, there were members who were unaware of the complications that come with the disease. The event raised over $94,000 which was sent to the Cystinosis Research Foundation for more research, clinical trials, and better treatment.

Can you share “5 things I wish people understood about people with physical limitations” and why.

Not all diseases are visible. They aren’t always sick. They wanted to be treated like everyone else. Their disease does not define them. Just because they look healthy, doesn’t mean they are

Can you please give us your favorite “Life Lesson Quote”?

Aarav lives by a simple saying and that is “have fun.”

Some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂

Aarav enjoys football more than anything, he loves the 49ers and lives for sports. Aarav wants to play for the NFL when he grows up and Sunday Funday’s are taken very seriously in our household.

Social Impact Heroes: How Minaxi Khalasi is raising awareness and funds to help people with… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.