Her son diagnosed with a rare neurodegenerative disorder, Sikh American activist battles for his life

Riaan
Riaan

New York-based activist and lawyer Jo Kaur and her husband, Richie, learned about their son’s fatal illness a few days ago.

For New York-based activist and lawyer Gurjot “Jo” Kaur, a recent diagnosis for her 15-month-old son came as a life-changing blow. Riaan was diagnosed with a rare neurodegenerative disorder. The fatal disease is extremely rare and affects just about 100 children in the United States every year, leaving them with an average life expectancy of 3 years to 5 years.

Kaur, popularly known on Twitter as Sikh Feminist, has been an active civil rights campaigner. Kaur is known within the community for creating many groundbreaking policies and laws promoting equality and justice in the United States. She also represented the first Sikh to testify before the US Senate.

In 2005, Kaur successfully took on Disney World for religious-based segregation. Representing the Sikh Coalition, she sought to deliver justice to a Sikh Disney employee who was asked not to appear before company guests because of his turban. She also worked with the survivors of the 2012 Oak Creek gurdwara shooting in Wisconsin.

Kaur has also been a very vocal supporter of black rights and civil liberties movements in the country. She was the primary drafter of the country’s first legal enforcement guidance issued by a government agency on the rights of black people to maintain different hairstyles at work.

After her son’s diagnosis, Kaur is now fighting for treatment for him and others with similar neurodegenerative diseases and is reaching out to scientists, researchers and physicians.

Currently there is no cure or treatment available for the condition. The progressive genetic disease halts the progression of kids, creates a plateau and then leads to decline. Terrifying symptoms include vision and hearing loss, developmental delays, mobility and developmental problem and fatal issues such as liver, cardiac and respiratory problems.

Kaur and her husband are determined to create awareness to fund research for genetic disorders that affect children. The couple aims to start a research foundation to push for finding a possible cure for Riaan’s disease and help other similarly impacted children.

The road toward finding therapies and cures for rare genetic diseases is long and fraught with many challenges including funding for such research. The family has also started a GoFundMe campaign to help cover travel, research and other costs that can be prohibitively expensive. Here is the link: https://www.gofundme.com/f/raise-money-for-riaans-treatment

Kaur’s said she has been overwhelmed by the support and directions she has been receiving on Twitter, where the community has bonded with hashtags such as #PrayforRiaan and #FightforRiaan.

As the parents are determined to find all possible routes including research for a new breakthrough treatment, the American Bazaar talked to Kaur about the diagnosis and her campaign to create more awareness.

Jo Kaur with Riaan.
Jo Kaur with Riaan.

You have been an active civil rights crusader and have a remarkable career as a lawyer in the United States. Tell us about your motherhood journey and family.

I have enjoyed a meaningful career to date, tackling many severe forms of discrimination, and helping to create ground breaking new policies and laws.

Motherhood, however, was a whole new, uncharted world for me. Riaan is my first and only child, and in fact, I became pregnant shortly after getting married. We were so excited, thrilled beyond belief when we heard the news. I had imagined I would need medical intervention to become pregnant due to some health issues but Riaan came naturally, our beautiful blessing.

I always thought I would have a daughter, it’s just what I’m more familiar with, I grew up around girls. I remember traveling through the Atlanta airport while pregnant and I met this wonderful elderly lady who owned a beauty shop, and she lovingly touched my belly and told me that she knew I was having a girl, and that she was never wrong about these things. A few days later, I found out I was having a boy! I still think about her, and smile. She was so confident! I never thought I’d be a boy-mom, and here I am, loving it!

I was nervous, and also really excited to have a boy, but mostly just so grateful to be pregnant with him, and was praying for his good health. I thought about all the things I would teach him, about how to be a good, beautiful, and kind person who could change the world as he saw fit. I thought about how I’d take him hiking at national parks, my husband thought about how he’d watch games with him, and play sports. Our excitement was through the roof. I had always been scared about being pregnant and it was hard, with morning sickness, and the like, but once I felt Riaan growing inside of me, I knew I was meant to be his mommy. My pregnancy became challenging toward the third trimester when I was diagnosed with gestational diabetes, and there were concerns about Riaan’s size. But then he was born, and he was beautiful, and perfect. We were sent home from the hospital – on our way, nothing to worry about – and began our family life. Life changed, and I was so ready for the transformative experience of motherhood. I fell in love with Riaan instantly — it began while I was pregnant — but it didn’t fully hit until I held him for the first time. I looked at his sweet little face in wonder. While pregnant, I was so curious about what he would look like, and my god, he turned out to be gorgeous. How could I have created such a beautiful child, I wondered? I swore in that moment that I would protect him forever and give him the best life possible, no matter what it took.

Do you think, especially in the South Asian American community, we need more awareness about neurodegenerative  diseases? Do you think the diaspora should do more to fund researches in the area?

Our situation is so ultra-rare — Riaan’s condition, which is fatal and devastating, impacts only a few hundred children globally — that I don’t think most people will fortunately be in our shoes. But that being said, I’m sure everyone knows someone with a rare genetic disease, including neurodegenerative diseases, which predominantly do their worst to children. What I’m learning is that we can push for targeted research and therapies, and that we are not helpless when these things happen. We were told our disease is incurable and untreatable, and to stay on top of his symptoms. That wasn’t enough for us. We aren’t going to sit back and let Riaan die without doing more. We’re committed to finding and doing whatever we can to push the research and create viable therapies for our son. I’ve learned that unfortunately it’s on us – the families – to engage in the advocacy work to push for a cure, it won’t just happen on its own. We have to raise the funds and drive the research, and then translate that to treatment. It’s not as if we can just take Riaan to the hospital, and they give him medicine, chemotherapy, or radiation, and we pray it works. We have to first create the medication or therapy, and that is an incredibly difficult hill to climb, on top of our trauma and pain about our son’s fatal diagnosis.

Which is why we need our community more than ever.

What folks can understand is that a community behind a family — and I use that term broadly — can make all the difference in saving that child’s life. Like with other things in life, with the right attention, public push, support, and funding, we can create miracles. For instance, there may be a lot of research already conducted into an area or disease but it’s just been sitting around for years, and no one has pushed it to the next level, elevating it to a clinical study and eventually therapies for children. I believe we can get there for Riaan, with the right advocacy and approach. But we have a long way to go, and potentially millions more to raise. The approach also doesn’t have to be disease-specific: drugs can target similar types of mutations in different genes, and gene editing or gene replacement therapies can work to potentially address any type of genetic disease. The problem of course is that when you’re dealing with rare diseases faced by children, you’re stuck in a situation where there are limited funds and a lack of research interest. Most of these endeavors are funded by the government or private grants, and pharmaceutical companies don’t always pick it up because it’s not profitable. One of the most well-known FDA-approved gene replacement therapies on the market now is called Zolgensma, available for Spinal Muscular Atrophy, a devastating genetic disease that is more “common” in the field of rare genetic diseases. A dose costs a whopping two million dollars! But thankfully at least these families have an option out there for their child even though it is very costly. The rest of us – over 95% of us – do not. We hope to change that for Riaan.

Tell us more about your family and Riaan…

I grew up in South Florida, and live in New York City with my husband Richie and my son Riaan. Riaan has already endured so much in his short life, and has emerged a continuously beautiful, strong, delightful, and fearless warrior, always filled with chardi kala (eternal optimism). A few months after Riaan was born, we became concerned about his vision because he wasn’t making eye contact or grabbing at toys. At three months old, he was diagnosed with cataracts and we learned he had probably never even seen our faces! This was right around the time the pandemic and lockdowns began to hit full force in New York City, which was then the global epicenter for COVID. We had multiple surgeries, which were so difficult on his little body, but he came out of it the brave fighter that he is. The diagnosis shocked and terrified us, and frankly overwhelmed us. We were so heartbroken. We had to quickly learn how to put contacts into a baby, and use eye drops, and take all steps necessary to prevent infection. We were devastated after the surgery when we did not notice any immediate changes to his vision but a month or so later, we noticed he began to grab a necklace we dangled in front of him. We were so thrilled, and then suddenly, he was doing full smiles back in responses to our smiles. I’ll never forget the first time we thought he was able to see us – those big, wide smiles he gave us, they were precious beyond belief. It was a miracle! Riaan is full of life, he has made so much progress since his surgeries. He is constantly developing new skills, interests, and he learns things really quickly. It’s really remarkable given his genetic diagnosis, and the severity of his disease. Of course we now understand that vision decline or loss is a part of his condition, and this breaks us because of all the progress he has made since his cataract surgery. But Riaan’s special, and we know it. We see the magic in him every day, and we have faith.

You have been very vocal about the diagnosis on social media. What is the kind of response you have received so far? Did you get any major breakthrough in terms of connecting with scientists, doctors? Any encouraging stories to share?

We have had an amazing response, people have been so kind and supportive. More importantly, people have connected us to researchers, doctors, and biotech companies, and other parents doing the type of work we’re looking to do. I’ve connected with a dad in Seattle who just founded a non-profit to help other parents in our situation launch their own research efforts, I’ve connected with a couple who dropped out of their careers and pursued Ph.ds at Harvard to set up their own lab to find a cure for a rare genetic disease that one of them has, I’ve spoken to experts who have helped us to get a lay of the land, and understand the way we need to think through things, and the questions we need to ask. And it’s only been three weeks since our diagnosis. We’ve spoken to dozens of experts at this point, and have more follow up calls scheduled. We’re pursuing some leads, and once I have more information, I will happily share. I’m really pleased with some of the researchers I’ve met who seem really committed to helping Riaan and other children as much as they can. What I can say is that I believe there is an answer out there, and with the right focus, attention, and maybe even funds, we can absolutely get there and save my Riaan’s life. We have to — he has mountains to climb, books to read and write, and baseball games to attend.

[Here is the link can be GoFundMe campaign for Riaan’s treatment.]

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