The “More to the Story” design is inspired by Isla, a spirited 5-year old from San Jose, California.
Every purchase in October will go toward regular infusion treatments for Isla that help strengthen her bones and provide pain management.
On November 6th, 2016, Mandy and Nick Rodoni welcomed their blue-eyed baby girl, Isla, into the world and officially became a family of four.
For the first eight months of Isla’s life, everything seemed normal. Isla was healthy, happy and was even starting to crawl. One day, Isla started crying and screaming in pain. Not thinking much of it, Mandy and Nick picked her up to console her. As the day went on, Isla started running a low fever. Thinking that she may be getting sick, Mandy and Nick gave her some tylenol and got her ready for bed.
The next morning, Isla woke up and ate breakfast as normal, but Mandy and Nick noticed she was babying her leg. They made an appointment with a pediatrician who said she might have pulled a muscle in her leg and that if they were really concerned, to go to the ER for x-rays.
“I will never forget when the doctors came back after we got the x-rays,” Mandy shares, “They looked as if they had seen a ghost. They showed us the x-ray of Isla’s femur broken in two. We were shocked because there was no bruising. My first thought was that she had cancer.”
As part of the hospital’s protocol, CPS was called while the ER continued to take care of Isla. A full body x-ray was done and showed that along with a broken leg, all of Isla’s ribs were revealed to be healed fractures. Under the impression that more tests needed to be done, Nick and Mandy waited to be admitted to the hospital, but behind-the-scenes, the local police department were being contacted.
“Next thing we know, it’s 2 am and we’re still waiting for her to get admitted. The police came to us and said they were giving us one last chance to tell them what happened with Isla,” Mandy explains.
What started out as a doctor visit quickly turned into a month-long battle. Isla and her older brother, Noah, were immediately taken into CPS custody. Reflecting on that time, Mandy shares,
“I didn’t know this could happen. That same night, they went to our home and removed our two-year-old son and put him in a group home. They took our baby with a broken femur and dropped her off at a separate group home without any medical attention.”
For 7 days, Isla and Noah remained in foster care with zero contact with their parents.
“We couldn’t even talk to them, our only updates were what we read in their reports. One day you’re living a normal, uneventful life and then something like this happens. We’re hiring attorneys and are in court every other day fighting to get our children back.”
Knowing that something medical was going on with Isla, Nick and Mandy fought to have her seen by specialists. However, since Isla was in foster care, she was technically owned by the county, which excluded her from Nick and Mandy’s insurance. Fighting for answers, the couple drained their savings to hire private doctors.
Mandy shares, “We went to a doctor at Stanford who took one look at Isla and asked if she had ever been tested for a metabolic condition. He looked at her eyes and told us within five minutes that suspected she had Osteogenesis Imperfecta.”
Osteogenesis Imperfecta (OI), commonly known as brittle bone, is a genetic disorder characterized by increased bone fragility, low bone mass and susceptibility to bone fractures with variable severity. While there are several types of OI, the team at Stanford found that Isla had type five which is extremely rare with only 100 known cases worldwide.
Using the results from Stanford, Nick and Mandy went back to court with solid evidence for family reunification. Finally after 33 days apart, Nick, Mandy, Isla and Noah were back home, but their journey to understanding Isla’s condition was just beginning.
For the next four years of Isla’s life, she received her ‘bone juice’ infusions to strengthen her bones by increasing bone density and correcting the imbalance between bone resorption and bone formation. Today, Isla is five-years-old and is now in remission for chemotherapy. Her treatments went from every 3 months down to twice a year, but since there are such few known cases, prognosis remains to be a guessing game. More than likely, Isla will have to get infusions for the rest of her life.
In Isla’s lifetime, she’s had a total of thirty fractures including both femurs, tibias, feet, ribs and even her skull.
“Lots of Isla’s fractures have been from very age-appropriate activities like twirling like a ballerina and falling. We were originally told that Isla may never walk, so the fact that she is walking, jumping and thriving is amazing. We didn’t know it would be possible. She gets sore and achy at the end of the day and we don’t know how the compression fractures will play out in the long-term. It’s a day-by-day, year-by-year journey. She’s still a very happy girl. This life is all she has ever known.”
Throughout this journey, Nick and Mandy share the humbling teaching point that you never truly know what people are battling. To a stranger’s eye, Isla looks like a bubbly, typical five-year-old girl, but beneath the surface, she is living with the pain that a senior with extreme arthritis would experience.
“It’s very difficult when you are living with an invisible condition,” Mandy shares, “I would get labeled as a helicopter parent when I would follow her around the park. They’d tell me that she needs to learn things on their own, but they don’t know that something as simple as tripping in the sandbox could cause her femur to break in half. The whole experience has opened my eyes to be way more compassionate with everyone I come across because you never know the path they are walking.”
While Isla may not be able to participate in a lot of things like PE, bounce houses and soccer, she still finds ways to be involved in the community. This year, Isla was ecstatic to start kindergarten. Mandy shares that Isla has been dreaming about this since forever, “I’ve prayed over this day since she was eight months old. I’m so thankful for our miracle.”
Reflecting on their diagnosis journey, Mandy shares that unfortunately, there are a lot of kids with OI who share a similar story involving suspected child abuse. To prevent this for future families, Nick and Mandy advocated for a mandatory hospital admission before a child can be removed from a parent’s custody. It was a five year long civil suit, but finally in April 2022, Nick and Mandy received the news that they had won.
“I would never wish this life upon anyone but it has been an honor to be the person that I needed in those first days. That’s where I find the silver living and purpose. Every day, I am reminded that Isla and all OI warriors are SO strong. I’m so proud of my girl for breaking all these barriers that have been put in front of her.”
Time to get loud shouters!
Throughout the month of October we will be shouting loud for Isla!
So click here to shop now where every purchase in October will go toward regular infusion treatments for Isla that help strengthen her bones and provide pain management.
To help support kids like Isla every month, click here to start a monthly subscription.