Hello from the Graingers! We are Drs. Scott and Jaime, chiropractors by profession, and the proud parents of two dynamic boys – Cashas and Josey.
As a family, we love traveling, watching the latest superhero movies the moment they release, and can never resist anything Star Wars. Being doctors, we’ve always been passionate about helping others lead healthier and better lives, but what cemented our resolve to take this initiative up in full force was the birth of our second son, Josey. That’s when our lives changed irrevocably.
In a way, the PeaPot Jones Foundation and Josey’s stories ring synonymous with each other. Our youngest came into this world with no complications, a rosy cheeked and adorable bundle. It was only when we unswaddled him after he’d slept for several hours, did we realize that he couldn’t lift his right arm. On examination, we discovered that he had sustained a broken arm, but the doctors wrote it off as nothing alarming, and an occasional side occurrence to natural births.
We didn’t dwell on it much after that. Nor were they any other red flags.
Then right before his first birthday, Josey sustained a head trauma, which resulted in a skull fracture. When we took him to the hospital, we were met with a blizzard of questions, rather than given any proper answers.
Where did this happen?
What did you do to him?
How did your son manage to do this to himself?
Where were you when this happened?
Little did we know that at the time, these questions were spurred on by suspicions of child abuse. After multiple rounds of collective interrogation, separate grilling, and exhaustive questioning, a chest X-Ray threw our entire world off balance.
On seeing it, we immediately knew something was wrong. It was blatantly evident that Josey’s entire rib cage was deformed along with severely advanced osteoporosis. At this point, the allegations were dropped, but we were left facing a more chilling dilemma – what exactly was going on with our child?
After a full body panel of X Rays, consultations with every single possible doctor in the hospital over 48 hours, blood work, and weeks of waiting, we finally discovered that Josey had sustained close to THIRTY old healed fractures throughout his entire body – he had broken his arms, legs, wrists, several ribs, vertebrae, the list went on. How could this be true and we never even knew anything was wrong?
We never saw it coming, nor anticipated something on such a scale when we took him in for his skull fracture. Josey was the picture of a happy and healthy boy, crying only when he was tired, hungry or needed a diaper change. He was steadily hitting all the milestones in his journey, was clocking the appropriate growth and development statuses required at each stage, and his eyes always lit up when he saw Mickey Mouse or his elder brother.
As the days passed, no doctor made efforts to get in touch with us over Josey’s prognosis. Even on meeting with several experts at the same hospital, no one was able to give us the concrete answers we were looking for. I’m sure a lot of you would agree with us when we say that the worst feeling in the world is knowing that something is going wrong with your child, yet not being able to comprehend what it is. Finally, the geneticist was able to shed some light on the matter.
Finally after months of waiting, Josey’s blood work had confirmed that he was suffering from Osteogenesis Imperfecta (OI), a rare genetic brittle bone disorder. What made the results even more confusing was that he had an even more rare type of OI, Type 5. This diagnosis narrowed Josey into about 1 in 100 people in the world that had been diagnosed with this disorder. Because of the rare nature of his disease we could not find any doctors in our area that had seen a patient with what Josey had been diagnosed with. This created the beginning of a long process to discover the doctors, therapists and support system to get him proper treatment. One day, after months of searching for answers, a search on Facebook turned up evidence of a group that dealt with what Josey was facing. Finally there was some hope again.
The group opened our eyes to this world, and still does – we read articles, blogs, stories about families going through the same situation, and tucked away many more facets of information. One particular post recommended The Montreal Shriner’s Hospital in Quebec for this particular type of Osteogenesis Imperfecta. Reigniting our old fighting spirit, we eventually made it to Shriners in Montreal, and to date we still remember what our doctor told us when he first met with us. The words “We can help you, don’t worry” had never sounded sweeter before.
We started Josey’s treatment in December 2015, and he’s scheduled to report there every 6 months till he hits 18. Unfortunately, there is no proper cure for his condition, but with the help of an infusion of medication, water therapy and land therapy, Josey is slowly inching his way to a better life.
This was how the PeaPot Jones Foundation was born.
As a 501c(3) nonprofit organization, we aim to raise funds through our ecommerce store, donations and fundraising events for children suffering from rare diseases and conditions, and in addition, strive to connect them to a vast selection of doctors and medical care so that they can receive the treatment they need. Our story is just one among the thousands out there, but we hope that our website, its products and blog will always serve as a reminder to never give up. We’ve envisioned our website to be a safe haven for parents like us, who are struggling to find answers and who are trying to keep calm in the face of their child’s condition. Your solution is out there, and we will help you find it. This is our promise.