“Hi, my name is Naina and I am 9 years old. This summer I was diagnosed with an autoimmune disease, Lupus. I hope to inspire kids like me to be brave and courageous. I want to spread the message that kids can get through anything with strength. Artwork has been a way for me to cope with difficult times. I have created a coloring book to help kids like me express themselves.”

For the month of May – Lupus Awareness Month – Naina and her mom, Ambika, are sharing their journey with lupus and how they’ve managed to cope with the day to day, what they’ve learned, and how to be brave and courageous. Their goal is to give hope and strength to other kids and families who are experiencing similar journeys and let them know they’re not alone!

Naina was 9 years old when she got diagnosed in the summer of 2022. She’d had one long month of high fevers. I took her to SickKids emergency after 7 straight days of fever and was discharged saying it was just a virus. I then took her again after two weeks of fever and was discharged again as just viral. Each time, we waited in the ER 8 to 10 hours in hopes of finding some answers. In the meantime, Naina kept losing weight and appetite and was getting weaker. She was lethargic and her fevers stayed high and continuous. I gave her Tylenol and Advil around the clock, but still her fever kept spiking upwards. It was hard and scary to see Naina in that state. After finally getting admitted at SickKids hospital where they ran many tests, we found out she has Lupus. It definitely took them a long time to conclude it was lupus because of the complexity of this disease.

After finding out Naina had lupus, I was in shock and actually stopped talking to friends and family. I was guilty of not knowing anything about Lupus. I was also trying to figure things out and did not want to be explaining it to other people.

There were so many appointments and the high dose of prednisone was causing its own side effects. For example, she was so hungry. I started baking a lot to give her healthy snacks, but that too was challenging given her allergies to egg, soy and nuts. It was a really hard time for us and especially Naina. She was in shock too as she did not know what was happening to her body and why she was so hungry. On top of it all, she also had to start taking weekly injections which were not only physically painful, but mentally scary too.

In many ways, it was like a night and day difference with Naina. She was my high-energy, always-on-the-move girl, but after she was diagnosed she was always indoors and had no energy because of the arthritis pain in her joints. It was always a hard question for me to answer when the doctor would ask, “how is she?”. I would like to say not good, but I guess the real answer is getting better and meds are working. Still, it was heartbreaking to see her indoors and on the couch.

Another challenge was with work and school. I used to work at Shoppers Drug Mart as a technician, but left when Naina’s fevers started as it was not possible to have a job and take care of a sick kid. Naina started school back in September and her attendance is very low, but thank God she is a smart kid and is able to keep up with the school work. A lot of adjustments have had to be made.

Still, with all these challenges, Prednisone and Methotrexate have been a blessing for sure and she would not be where she is today without those two drugs and the amazing talented Lupus team at SickKids. They saved her life by starting her on those meds and following up with blood work and adjusting doses as needed.

Naina started drawing a lot and got her first drawing book published. Life gave her lemons and her coloring book she published is her lemonade. She is my diamond who always goes through high pressures of life, but always comes out stronger and brighter.

I am a firm believer that whatever doesn’t kill you makes you stronger. Naina since birth has always taught me a lot of different lessons. Lupus taught me to slow down. Since Naina slowed down, I learned to slow down with her. Lupus is indeed a disease with a thousand faces. Everyday is a different face of this disease. I am still learning to take it one day at a time. There are some good days and some bad days.

Naina’s coloring book has been a big blessing. Something that took her mind off of her disease and mine too. I was focused on publishing and distributing it and she loved to talk about it at school and color with her friends. Naina wants to spread love in the world and by making this book she is able to spread so much love to kids going through tough times.

We also got a dog because of her autoimmune diagnosis to provide her with dog therapy. Roxie, our 1 year old goldendoodle, has been a big blessing to our family. We can’t imagine life without her. Roxie’s unconditional love has really helped our whole family get through this rough patch.

Lupus has taught our whole family compassion and understanding. We are not perfect, but we really have grown as a family together to work to support each other and to be more understanding towards Naina’s different pains she feels each day.

Naina and Ambika’s Advice for other kids and families going through similar experiences:

You can handle this!!!! Things will only get better. The hardest part is not knowing. Once a diagnosis is made, start trusting in the treatment plan. I went crazy with gluten and dairy-free diet plans for Naina and that made the situation worse and I would advise moms to take it easy and follow your child and not the internet. A happy child will recover faster than a stressed out kid.

Follow your heart and do the best to keep your and your child’s mental health as a priority. Things will fall into place. The beginning is the hardest and once you pass that, you will get the hang of things.

I am still learning each day and still trying to understand Lupus. There are many motivational quotes I have always heard, but so many I have started to live by because of my daughter having Lupus.

Somes quotes that I printed and posted on my wall so that I could read them on the days I am losing hope are as follows:

“They whispered to her you cannot withstand the storm…she whispered back…I am the storm”

“Take it one day at a time”

“It’s okay not to be okay”

Kids look up to you and how you handle the situation and they tend to do the same. I noticed when I broke down, she broke down and the days I am brave she is okay. They look up to us. So fake it till you make it. Smile and they will know they will be fine. It is a storm that will pass.

Breathe!!! (what I still forget to do). Never lose hope. Nothing is permanent. Kids are watching and learning from you. Keep up a brave face for them, but know it is also ok for them to see you break down – just make sure to show them how you get back up again.

My husband and I will never stop advocating for Naina. The road ahead is unclear, but like our brave kid has shown us, we control the things we can, and keep the faith for better days ahead. We count our blessings that we have each other – and your kind and generous support.

Naina made a coloring book for kids going through a hard time just like her. Her main message is to never give up and things will get better. Just like seasons come and go, flare ups come and go too. Nothing in life is permanent. Not even pain. The main thing is not to lose hope and keep doing what you love.

Just like Terry Fox ran in his pain to create awareness and fundraise for cancer, Naina drew in her pain to make coloring books to spread awareness of Lupus and to fundraise. Only through awareness of a disease will a cure be possible. It has to be made visible to have a cure.

Download Naina’s colouring book here!

If you would like to donate to lupus and other rheumatic disease for Lupus Awareness Month click here.