Mother of Invention
Amid financial instability, the stresses of growing a business and the struggles of single parenthood, Jana Berenguer shines a light on her beautiful son.
Jana Berenguer made an innocent but impactful mistake.
When her social media community asked how her tube-feeding son, Alonzo, had gained some much-needed weight, she gave them the honest truth. Posting a video to her followers, the Filipino mum revealed exactly which enteral feeding formula was responsible for Alonzo’s chubby cheeks – and exactly where she got it from.
The formula? PediaSure. The only local stockist? S&R – the ‘Costco of the Philippines’.
“And in a span of two weeks, three branches sold out,” says Jana. “I was crying my heart out, because now I’m out of stock!”
Jana and Alonzo live in Antipolo City, just east of Manila. And because of that one video, all across the three main islands of the Philippines, families have been travelling hours to their nearest S&R.
“They will message me saying, ‘it’s out of stock here!’ and I want to say, ‘I don’t own S&R – I’m also having trouble looking for the freaking milk!’”
Jana has more than a million followers and, evidently, a lot of influence. But even without the effects of a viral endorsement, the Filipino tube-feeding community is accustomed to scarcity.
Jana says she can only source Alonzo’s MIC-KEY gastrostomy (G) tube and extension sets from online marketplaces and, sometimes, through bidding wars against other families.
It’s a constant scramble for the single mum who runs her own fashion line, J+A The Label. Through this business, Jana supports local children who share Alonzo’s diagnosis of cerebral palsy, helping fund therapies, mobility aids and feeding supplies. She also helps run her family’s catering business – and lends a hand to her five siblings.
“My morning has been chaotic because I have two brand collaborations that I need to film but my sister just recently gave birth, so I had to rush and help her out,” says Jana. “A chaotic morning – but a normal morning for me.”
Alonzo did his mum a favour by sleeping through the night and waking, true to form, in high spirits.
“He always smiles,” says Jana. “He’s such a morning person. It’s lovely to see him smile every morning.”
The pair have been through a lot in Alonzo’s five years. Soon after he was born in the northern city of Baguio, Jana noticed Alonzo would vomit when she breastfed him at certain angles. The vomiting continued as he transitioned to solids and, when Alonzo began having seizures, he was diagnosed with Sandifer syndrome. This condition tends to ease with treatment as the digestive system develops. But Alonzo’s symptoms continued – and he wasn’t gaining weight.
After multiple hospital admissions with aspiration pneumonia, a modified barium swallow x-ray showed food and drink were going straight into his lungs.
“So they told me he needs to be tube-fed,” says Jana. “They said we could do a nasogastric (NG) tube and I thought, this doesn’t seem so bad. Then they placed it in him and I had to stay strong because all the doctors were there in the room. As soon as they left, my tears just fell.”
Jana says G-tubes are not commonly used in the Philippines. Of the 200 children she supports through her business, only a couple who rely on tube-feeding have a G-tube. The others all have NG tubes — as Alonzo did, for two months.
“It was horrifying,” says Jana, who was trained to replace Alonzo’s NG at home. “I was the one putting it in and pulling it out and I was just so sad, seeing his face crying. This was not something I wanted my son to go through every week. So I called the doctor and I said, ‘I don’t care how much it costs, just do the [gastrostomy] surgery’.”
While all of this was happening, Jana was also finding her feet as a sole parent. Alonzo’s father left when he was just one.
“It was really, really hard mentally because I had nothing,” says Jana. “I had zero money. My parents can’t help me financially. So I decided to focus on my son and give 101 per cent of my energy to this kid.”
Jana moved back to her parents’ home in Manila and found ways to make an income. Having launched a successful cookie shop in her early 20s, she rallied the fellow cooks in her family, got in the kitchen and started selling meals and baked goods.
Cocina Berenguer, a comfort-food restaurant and catering service, now has its own premises in Antipolo City. Above this you’ll find J+A The Label, a fast-growing brand of inclusive, all-ages apparel.
While Jana works hard on this new venture, her parents and siblings help with caring for Alonzo. When J+A began to take off, she was able to hire two caregivers – one of whom was her own childhood nanny. Jana’s family has lived in the Philippines since her great-grandmother arrived in the Spanish colonial period. Now, Jana is applying for Spanish citizenship, with plans to possibly relocate.
“We are hoping for a change in our medical supplies and expenses,” she says. “I did my research and apparently, in Madrid, it’s all free.”
Jana currently pays for all of Alonzo’s medical and support needs and, as a result, has around ₱400,000 (about $AU10,000) of credit card debt.
“Our government does not give [anything for] free,” she says. “Even the biggest medical supplier here in the Philippines doesn’t provide G-tubes. So I have to buy them on Amazon, eBay or sometimes on Facebook.”
Providing essential supplies is just one role social media has played in Jana and Alonzo’s story. Soon after Alonzo was diagnosed with cerebral palsy, Jana decided to use her accounts to raise awareness.
“I love to talk, I love to edit, I love to share my story – why not start my TikTok [account]?” she says. “At the time I found out [about Alonzo’s diagnosis], I was like, ‘huh, what?’ I’d heard about autism and I’d heard about Down syndrome… what’s cerebral palsy? I couldn’t understand – and that’s what pushed me to do and share my videos and our story of Alonzo.”
While showcasing the highs and lows of medically complex life, these channels also allow Jana to better support Alonzo. One of Jana’s followers – a nurse in Canada – introduced her to the formula that saw Alonzo rapidly gaining weight and, subsequently, sparked a buying frenzy.
On the morning of this interview, Jana’s dad visited two S&R branches on the hunt for his grandson’s PediaSure – both entirely cleared of stock.
“So tomorrow, after Alonzo’s therapy, I’ll be going to Marikina – another city here,” says Jana. “We’ll check, because there’s an S&R there.”
The chaos continues. And while Jana builds a hopeful future for her family, a new face has found its way into her social media videos. Jana’s partner, a divorcee and fellow parent.
“He has four kids and they love Alonzo, so we are a blended family,” says Jana. “We actually barely see each other because he lives in another part of the Philippines, but he’s someone I can talk to.”
Even in the most hectic of times, Jana says that when she’s with Alonzo, everything else disappears. Not long after this chat, during a “rough couple of weeks”, she shared this message for her son with her online community:
“Thank you for being my reason to keep going on the days I felt like giving up. For showing me a love so pure it softened even the hardest part of me. For teaching me that strength isn’t about never breaking, but about always finding the courage to heal. For making me believe in myself when I couldn’t see my own worth. You saved me in ways you’ll never understand, and for that, I love you so much.”