Raising My 17-month-old Daughter With Epilepsy: Singapore Mum Shares Her Story

Deepshikha Punj
·11-min read

When power couple and co-founders of Singapore’s STEP Studio, Stephanie Loh Kai Wei and Deo Amarawi Hogiono, introduced their beautiful daughter, Sasha Hallie Hogiono to the world, little did they know their life was going to change completely.

Parenthood was an incredible experience for this young couple, but it also brought about some unprecedented challenges.

At just 17-months-old, Sasha Hallie Hogiono was diagnosed with epilepsy after suffering seizures. It turned the lives of the entrepreneur couple upside-down. But Stephanie and Deo remain resilient to fight for their daughter’s health.

Recently, the Singapore mum decided to share her story on Instagram that saw heartwarming support from all parts of the world.

“15 months in, Sasha suffered her first cluster of 6 seizures. I carried on with CNY celebrations as if I really believed it would bring good fengshui… deep down I knew i was just afraid I would lose the life i expected to have when I had a baby. A month after, I relaxed and assumed she was in the clear, and worked 24-7 again. Now, 17 months, she’s been diagnosed with epilepsy after another episode of 9 seizures,” she wrote in her post.

Now, in a special conversation with theAsianparent, Singapore mum Stephanie Loh Kai Wei speaks about her life before motherhood, the challenges of pregnancy, and how she is raising her daughter Sasha.

For Running STEP Studio In Singapore To Parenting Sasha

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Stephanie and Deo, passionate dancers and choreographers, first met in NUS and together co-founded the famous STEP Studio in Singapore. The boss mum and dad now manage the studio as well as co-parent their daughter, Sasha.

“My husband and I are both full-time dancers, we met in NUS where we did hall dance and cheerleading, and we set up our company together, STEP Studio, which focuses on developing our youth dance community,” Stephanie shares.

Having been together for 10 years now– which includes four years of being married–little Sasha came into their lives on October 31, 2019. “The perfect treat for Halloween,” as the Singapore mum puts it.

But Sasha’s birth wasn’t all that easy.

Complications developed unexpectedly and the first-time mum tackled gestational diabetes towards the end of her third trimester. Adding further to the complication, her blood pressure shot up in the 38th week of the pregnancy and the gynaecologist recommended induced labour immediately.

After spending 36 hours in labour, Stephanie could not undergo a natural delivery. And due to preeclampsia, she had an emergency C-section.

Speaking on her tough delivery, Stephanie says, “It wasn’t what I planned for, but I trusted my doctors and nurses, I trusted my instincts and we trusted our baby to give us the signs. She came out well and healthy and that was all that mattered.”

Sasha’s First Seizure And Diagnosing Epilepsy

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However, not everything is perfect in life and sometimes the higher being chooses to test your patience and tolerance. The young parents were in for a shock when Sasha was only 15-months-old and got her first episode of seizures.

It was a week before Chinese New Year.

Each time, her seizures would come in clusters with no pattern or trigger to the same. The parents found out about two months later that Sasha had epilepsy after the second episode of afebrile seizures.

It’s a taken a while since, but the little toddler has been seizure-free over the past few weeks since she left the hospital. Her mum tells theAsianparent, “Sasha has been on the latest AED (Anti-Epilepsy Drug) called Levetiracetam (aka Keppra) and she seems to have adjusted well to the drug without much side effects.”

She also has global developmental delay alongside her epilepsy. But the Stephanie and Deo have been religiously attending all our physiotherapy sessions and taking the doctors’ advice on sending her for more playgroup classes for motivation and morale.

What Is Epilepsy?

Epilepsy is a chronic disorder that sees the person suffer unprovoked seizures. Details about what causes it and is largely unknown but experts suggest it could be related to a brain injury.

There is no known cure for epilepsy and it can affect one’s own safety, relationships, work, driving, and more. About 65 million people in the world have epilepsy, out of which about 23 million people live in Asia.

The Epilepsia journal suggests that about 3.5‐5 per 1000 people have epilepsy in Singapore.

Handling A Baby With Epilepsy

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For parents who weren’t aware of how epilepsy looks like, Stephanie and Deo handled Sasha’s first episode with maturity. They rushed her to KKH and let the doctors take over from there. They were more prepared for the second episode and called an ambulance to rush Sasha to the hospital following the advice of the medical staff.

Since then, it’s been an emotional rollercoaster ride when it comes to handling the whole situation. The young parents continue to remain resilient and are doing whatever they can for their little daughter.

“I honestly don’t know how I’m really ‘handling it.’ A lot of me is still in fight mode, survival mode. I am just doing whatever I can to get through each day,” says Stephanie.

For now, epilepsy does not have a direct course of treatment and it remains a difficult illness to cure; mainly because there are different types of epilepsy and different kinds of seizures.

But the parents are hopeful that Sasha will be able to outgrow the illness with the current medication.

They are hopeful that science will find a more lasting cure in the years to come.

Managing A Marriage During Challenging Times

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The unprecedented situation brought on by Sasha’s health has also been stressful for Stephanie and Deo as a couple. The Singapore mum candidly reveals that she never saw her husband breakdown, despite him being an optimist.

Nevertheless, he remains a strong pillar for Stephanie and Sasha amidst these trying times.

He has always been the happy-go-lucky positive guy who takes everything in his stride and believes there is always something good in every situation. But this time I saw how shaken he was at the hospital, and yet tried so hard to still be strong for me and our baby girl. He took care of the hospital paperwork and our studio business matters so I could have my space to process the trauma we went through,” says Stephanie.

He has also been hands-on with the paperwork and the couple’s dance studio, which allowed Stephanie to spend more time with the baby. The parents take turns to spend time with Sasha and manage other professional commitments.

But Deo too needed a support system during this period.

As she puts it, “I remember telling myself that as much as I needed my hubby, he needed his wife to hold him through this too, that he has also witnessed his baby girl suffer through those seizures and hospital tests and that he was as dishevelled as I. Whenever I need to break down, I break down and cry my eyes out and pray.”

It’s also helped that the couple has been open and receptive to each other during these times. This helped them come even closer in the past few challenging days. “We always communicate; he’s always made me feel safe to share how I feel,” she says.

Sasha is now home and back to her daily activities. The worry of seizures coming back lingers on but there’s also the challenge to give Sasha a good quality of life.

“Yes, Sasha has been home with us for over three weeks and her daily activities are back in place. The worry of seizures coming back will probably never go away but we are doing our best to let her still have a good quality of life and be a toddler that gets to explore and play freely.”

Stephanie still is unable to leave her alone in a room, fearing that the seizures may come back causing her to fall or choke herself. “I’m also more cautious about whether she may get overly excited or too tired from play because we don’t know what could trigger the seizures. Having to observe your child non-stop is exhausting, but we have found a way to take turns and be there for Sasha as best we can,” Stephanie explains.

It gets exhausting to observe your child 24×7. But with no known pattern for the triggers, there’s little that can be done about it.

Thankfully, the couple also has extra help from the mum’s parents and the maid, who are equally involved with Sasha. “Our life has took quite a change from before, but we are making it work somehow with a lot of help from my parents and my helper,” shares Stephanie.

Playgroup For Coping Up With Development Delay

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Since Sasha also suffers from development delay, Stephanie has signed her up for parent-accompanied playgroup sessions.

“Her physiotherapist recommended we do so in order for her to be motivated by other toddlers who have reached their milestones,” the mum explains. These sessions help the little one to be motivated by other toddlers who have reached their milestones.

Sasha is also following speech therapy, as recommended by her neurologist. The earlier she speaks, the easier it will be to find out how she feels before or after a seizure.

At home, the parents are now childproofing the house with more padded cushions and plan to install a baby cam in the living room.

All Mums Can Relate With Stephanie

Sometimes, situations like these can make you feel alone. Thankfully, the power of social media lets you connect with similar people and learn from them and grow. Stephanie says that she received a lot of support and love from strangers after posting her story on Instagram.

As she puts it, “When I posted about this on my Instagram, I was surprised at how many mothers, most of whom were strangers to me, came forward to share their stories with me to help me realise I was not alone. It made the “mom-guilt” lessen, and I felt like my baby girl was not alone too. If sharing my story helps other families, I see this as Sasha’s super power – the ability to take some pain away, the ability to connect and lift others up.”

Stephanie’s Mantra In Life: I Dance. I Teach. I Create.

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Dance has been her biggest motivator, allowing her to go back to her happy space.

She says the job “has kept me from falling apart because I best express my feelings through choreography and movement. Sasha lights up when she comes with us to our studio and watches us work. And I know in some way I’m being strong enough for her.”

It also helps that Stephanie’s peers are ever supportive allowing her a safe space to rant and vent. This also helps her stay positive in these times, along with the constant support of her students, parents, and colleagues.

What I appreciated the most were my mama-friends giving me so much space to vent and rant, never “offering opinions” and always helping me stay positive. My students, and even parents of my students would send me words of encouragement and affirmation. I am grateful for the strength and support I get from everyone,” she shares.

The Way Forward For Sweet Sasha

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For Stephanie and Deo, the plan has not changed despite their baby girl’s condition. They plan to live well and happy and are positive about overcoming all obstacles together as a family.

“I live with my parents, and my father has retired, so Sasha always has her grandparents and our helper with her. This is extremely comforting and necessary. My family is very close and I am very blessed to have a loving and supportive family.”

“At work, wow I have an amazing team of instructors I also call my dance fam. My crew is literally an extension of my hubby and I, they carry our values, vision, and reputation in the dance community and I have never worried a day about our studio and schools because they have remained so strong and dependable for me,” she says.

As for her baby’s future, Stephanie says, “We still believe in raising our baby girl with the values we live by. We will help her manage her seizures if she continues to have epilepsy, but we know of so many people who live very well with this illness and we wish the same for her.”

“My baby girl has shown me more bravery and resilience than I ever had. And she has made me a much more courageous person too,” says Stephanie.

With dance being an eternal motivator for the couple, the studio fuels their passion. They hope they can inspire more people through their story.

For Sasha, the next five-year goal is to let her experience the joys of being a six-year-old.

Lead and Featured image courtesy: Instagram/@mamasteppiness

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