A mother has illustrated how quickly and completely her daughter’s life changed—just by sharing a video of her eating ice cream.
Erica Minond, 31, lives in New Jersey, and is mom to a baby boy born earlier this year, and her two-and-a-half-year old daughter, Lydia.
Minond runs TikTok account @lydia.jean.pdcd, which she uses to raise awareness of a rare disease her daughter lives with: PDCD, or Pyruvate Dehydrogenase Complex Deficiency.
As Minond explained it to Newsweek, PDCD “is a rare, life-limiting genetic disease that prevents the body from using sugar and carbohydrates for energy.”
“Normally when we eat carbs, the body turns them into fuel to power the brain and muscles. In PDCD the ‘gate’ that allows this conversion is essentially broken,” she said. “Instead of becoming energy, sugar builds up and turns into acid in the blood. At the same time, the brain and body are left starving for ‘fuel’.
“For Lydia, this means carbs are toxic.”
Since 2023, the dedicated mother has been running Lydia’s TikTok account to share her journey with PDCD, and on August 23 she shared what first appeared to be a sweet but ordinary clip of Lydia as a baby, trying her first mouthful of ice cream.
In the clip, Lydia, then aged five months, smiles at her mom with bight blue ice cream around her mouth—but Minond wrote over it: “Late night finds but it’s the only video I’ll ever have of my daughter eating ice cream because five days after this she was diagnosed with a terminal condition where her body can’t break down sugar.”
“A little over two years later and I still get upset thinking of all the foods Lydia will never be able to enjoy due to this condition,” she added in a caption.
Minond explained to Newsweek that Lydia was born “healthy,” with “no sign of anything wrong at birth or in the weeks after.”
By four months old, Lydia was not properly holding her head up by herself, and while she was diagnosed with low muscle tone, doctors suggested she would likely “catch up,” and it was not a major issue. But Minond, noticing Lydia’s pupils were two different sizes, and that she favored her right side, “had a gut feeling something was not right, despite multiple doctors’ assurance that she was fine.”
She took things into her own hands, seeking genetic testing for diseases that present similarly to cerebral palsy, and received the results when her daughter was five-and-a-half months old, changing their lives forever.
If Lydia eats carbs, her body produces lactic acid, which builds up in the blood and “can make her dangerously ill very quickly,” with symptoms including vomiting, lethargy, confusion, seizures, loss of consciousness, organ failure, and even death.
The only way to keep her daughter “safe,” Minond said, is with an extremely strict medical ketogenic diet for the entirety of her life, which doesn’t cure the disease, but slows its progression.
“For most kids, sugar is a treat, but for Lydia it could take her life. Her future is still uncertain, but every day on the medical ketogenic diet gives her more time to grow and learn.”
A ketogenic diet lacks carbohydrates—such as milk, grains, pasta and potatoes— and is instead rich in proteins and fats, typically including meats, eggs, cheese, fish and fibrous vegetables. It is difficult to follow—carbohydrates usually account for around 50 percent of the typical American diet, according to Harvard Health.
A 2017 study published in the National Library of Medicine studied the short and long-term outcomes of a ketogenic diet in PDCD found that it had a positive effect, particularly in epilepsy, ataxia, sleep disturbance, speech and language development, social functioning and frequency of hospitalizations.
She shared the video of her daughter’s first and only taste of ice cream to showcase that “my daughter will never be able to have a scoop, let alone a single bite, of ‘regular’ ice cream ever again in her life.”
But, she said, the clip exploded in popularity “for the wrong reasons.”
The video has been viewed close to 700,000 times, but some commenters chose to take that opportunity to scold Minond for giving her ice cream in the first place, which is generally not recommended until a baby is older than six months or a year.
One commenter wrote: “Yeah cause she shouldn’t have ice cream when she’s only like four months old.”
However plenty leapt to Minond’s defence, with one replying to a commenter who said Lydia was “too young for artificial sugar” by writing: “Too young for a terminal illness. But here we are.”
Minond herself replied to one commenter: “Thankfully the 3 bites of ice cream she ate didn’t cause her terminal GENETIC condition. She was born with it. The 3 bites of ice cream have not impacted her health at all. Thanks though!”
And as one commenter put it: “All these comments about her age. At least she got to try it.”
“Because her brain runs on limited energy, her development is delayed and the condition is considered terminal,” she said. “Every day is a balance of protecting her from the foods her body cannot handle while ensuring she gets the fuel she needs to live and grow.”
Now two-and-a-half years old, Lydia has recently started to walk, and has up to 20 words in her vocabulary—skills her mother describes as “miracles.”
“When we first received her diagnosis we were provided with the grim statistic that 90 percent of children diagnosed with this condition die by 4 years old, and she would likely never walk or talk.”
Since Lydia’s diagnosis, Minond has found solace in parent-led non-profit Hope for PDCD Foundation, dedicated to finding a cure for the disease and which “helps give children with PDCD, like Lydia, a chance at more time, better quality of life, and hope for the future.”
And despite her health difficulties, Minond said her daughter has grown into a “funny, curious, loving, and opinionated” little girl.
“She loves Ms. Rachel and loves to paint. She is truly such a special, happy girl.”
Read the full article here
