Kids born with typical genetics usually grow and develop in expected ways, inheriting traits like hair and eye color from their family.
They usually don’t have many health problems related to their genes, and they reach milestones like sitting up and walking at the usual times.
They go to school like other kids and interact with friends and family without needing extra help because of genetic issues.
Sadly, some children don’t live as conveniently as others.
In contrast, kids with rare genetic conditions often face special medical and developmental hurdles.
These conditions might come from their parents or happen by chance. They might look different or have health problems not common in most kids.
Their medical care often involves seeing different doctors and sometimes need ongoing treatments to help manage symptoms.
They might take longer to reach milestones or need extra help to get there. But even with these challenges, these kids have their own strengths, and with support and understanding, they can do well and live happy lives.
One of these kids is Piper.
Piper was born with a condition where parts of her 2nd and 11th chromosomes were not in balance, called an unbalanced translocation.
Essentially, pieces of her 2nd chromosome and 11th chromosome broke off. Specifically, the end of her 2nd chromosome, called 2q37.3, broke off and disappeared, causing what’s known as 2q37.3 Deletion Syndrome.
Additionally, a part of her 11th chromosome broke off, duplicated, and then rejoined, leading to another syndrome called Beckwith-Wiedemann syndrome.
This syndrome causes excessive growth because cells divide rapidly, putting children at risk for childhood cancers. Sometimes, children with this syndrome have blocked airways due to enlarged tongues.
Meanwhile, 2q37.3 deletion syndrome is rarer, with only about 200 cases worldwide. It presents with symptoms like features similar to autism, low muscle tone, and occasional seizures.
And she’s the only person in the world to have two separate genetic conditions.
The method she got them, an unbalanced translocation, is also very rare. Less than 1% of people with Beckwith-Wiedemann syndrome get it that way.
When asked how she explains Piper’s difference from others, her foster mom explained that when Piper meets a new child who hasn’t been around any disabilities, they often break it down.
If they’re focused on the wheelchair, they’ll say, “You know, she uses this so she can move around like you guys.”
Then, they tell the little kids that Piper keeps the best secrets. She’s not going to tell any of your secrets, but she can hear you and she understands what you’re saying.
They’ll also try to teach them a couple of songs that she likes to communicate with and just encourage them on ways they can interact with her.
So technically, they don’t break down, that she’s sick or has complicated chromosome stuff. They just keep it simple for them to understand that she’s a kid.
Piper’s joy!
Even during the tough times, there’s happiness.
Especially when Piper was younger, she was very sick. Her family went through many scary moments with her. It felt like they were always fighting to keep her alive.
But in between those tough times, there were many good days. It’s comforting for them to know that their days are numbered, and they won’t pass away before their time.
Piper is a real blessing to them.
Learn more about Piper and her inspiring story by watching the video below.
Please SHARE this with your friends and family.
