Pediatric Stroke is the Prime cause of Cerebral Palsy #infantstroke #perinatalstroke
Julianna Rose Children’s Foundation is a 501c3 charitable non-profit dedicated to raising awareness and educating about pediatric stroke, cerebral palsy and all brain injury causes and effects and to improving the current and future lives of children with disabilities by creating the next generation of inclusive, nation-wide community-based, support centers for children with disabilities designed to start-stay and raise-them-up from diagnosis to college-age and beyond.
My name is Mary Rinaldo Hansen. I am the founder of the Julianna Rose Children’s Foundation. In June 2001 my husband Jeff and I happily welcomed our first child, a beautiful baby girl, Julianna Rose and in May 2002, after almost a year of unanswered questions and concerns about her development, we received confirmation that our beautiful, happy, bundle of joy, in fact had suffered a left and middle cerebral arterial infarction – a stroke, either before, during or sometime after birth, and the cause of her with hemiplegia cerebral palsy and early childhood seizures and global developmental and learning delays.
In 2006 we established the Julianna Rose Children's Foundation to help other families and children. We operated as a family-run, self-funded, grass-roots organization whose mission was simply dedicated to raising awareness and educating about pediatric stroke, cerebral palsy and all pediatric brain injury causes, effects, co-occurring conditions and importance of physical therapy for recovery and continued maintenance.
As Julianna's needs evolved as she grew, our mission did also, reflecting lessons learned and experiences endured by Julianna, as well as other children and families. Our mission evolved to include anti-bullying campaigns, mental health awareness and suicide prevention, advocating for improved academic assistance and access to and opportunity in community based sports and the arts as well as the need for recreational therapy. A mission that now also includes preparing children with disabilities for their futures in higher education, careers and employment assistance.
Sometimes, an idea can become bigger than you, and either you can move mountains and rise to the occasion or you can let it remain just an idea. We choose to move mountains and rise to the challenge. So, 2018 we took our foundation from a small self-funded to recognized 501c3 charitable non-profit so we may carry our mission to communities nation-wide by creating the next-generation of pediatric therapy and support centers that will allow easily accessible and available services and programs under one-roof and encompass the present and future needs of children with disabilities.
Centers that will be fully inclusive and include all forms of pediatric therapy including recreational therapy, early childhood to college academic assistance, mental health & suicide prevention awareness and support, access to and opportunities in sports and the arts, employment assistance and give-back volunteer opportunities for children with disabilities as they grow. All programs and services designed to start-stay and raise-them-up from diagnosis to college and beyond. All regardless of a family’s insurance status or ability to pay.
For the first time since our creation, we have to ask for and rely heavily on the generous support of others. Support, not just through monetary donations, which we’ll happily accept, but also donations of adaptive sports equipment, therapy related equipment, technology, adaptive devices, time and expertise from individuals in varying fields and of all abilities and backgrounds, to help us support the ever-evolving needs of children with disabilities.
Every event and experience, from Julianna’s birth, diagnosis and countless doctor appointments to evaluations, therapies and academic and social challenges, was and continues to be the inspiration and driving force behind why we established the Julianna Rose Children’s Foundation, with ever-evolving missions.
Today, at almost 17 years old, Julianna has become a thriving, out-going and confident young lady just finishing up her Junior year in high school, a disability advocate for children and champion for anti-bullying & suicide prevention, and now proudly, a sitting board member of this, her own, not-for-profit foundation determined to help other children with disabilities have more opportunities and access to programs, services and resources than she did. Today, Julianna is a leader, a young women with a vision and desire to help other kids with disabilities be the very best version of themselves, their way, not just while their kids, but also as they enter young adulthood. However, this wasn't always the road Julianna traveled.
My husband Jeff and I were in middle school together. We were friends and became high school sweethearts and have been together ever since. This September will be our 35TH anniversary together, 28th of those married. He is a contractor and I was the east coast network administrator and national training coordinator for (who at the time were) the country’s largest insurance wholesalers. We had been married for 10 years and had given up on having children – until one day it just happened and we were over-the -moon excited and in June 2001, we welcomed our first child, Julianna Rose.
I was still working full-time which involved traveling extensively. My office was located downtown Manhattan, a few blocks from and overlooking the Trade Center – until it didn’t anymore. I also took care of my father, who was diagnosed with cancer two years prior and continued to do so after Julianna was born because my mom was still in post triple open-heart surgery recovery herself. Julianna and I took my dad to and were with him at every doctor appointment, chemo and radiation session, surgery, hospital stay & post-surgical rehab stint.
In January 2002, in part due to 911 and because Julianna and my father needing me, clearly full time, I resigned my position and in March 2003, my dad's long and warrior worthy battle ended.
In 2004, we welcomed our second child, Stephanie and my husband expanded his contracting business. In 2006 we opened a new start-up business, a hardware store, to complement our existing business and welcomed our third and last child, Emily.
In June 2007, a week before Julianna’s 5th birthday, my mother passed away. It was sudden and unexpected. It broke our entire family’s hearts and crushed Julianna, to the core, she was Julianna’s very best friend and it was a loss she would not recover from for a very long time.
In 2012, we were hit very hard by hurricane Sandy, and are still recovering from it of 2018 & remain temporarily relocated until our home is finished being rebuilt.
We include these small highlighted details of our lives, so that as you, we hope, continue to read through Julianna’s story, you can appreciate that everything you just read happened while everything you’re about to read was happening
We want you to get to know the people behind the organization, on a personal level, and come to appreciate the team work, focus, fortitude, dedication, experience and resiliency we bring to our Missions table, the same table we’re asking others to help set with financial support and donations
Julianna was born in 2001 via C-section, a crying, 7lb 10oz 9 Apgar scoring, happy and for all intent and purpose, healthy baby girl with a clean bill of health. But, well, there was something....and by the 2nd well-baby visit, I had already started noticing little things, questioned the pediatrician and was assured, at that and each subsequent visit, all was well and I was just experiencing new mommy worries. "No. I wasn’t".
The little things I noticed included the way her shirts & onesies always fell off her right shoulder. The amount of baby-fat was noticeably more on her right leg & foot vs her left side. When she reached for items, it was almost exclusively with the left hand but she would bring her right hand up to help hold her bottle or toys. She didn't climb on things, crawled only on her belly pushing off with her leg &had body tremors, frequently & throughout the day, everyday during which she was completely unresponsive and right before her ninth-month well check, we saw her try to crawl on all fours for the first time, we were thrilled..a little less so when we realized she was trying to crawl with her right leg up in the air & unable to keep her torso up with her arms, her poor little body coming down head first onto the carpeted floor.
The next day after waiting over an hour to be called in for her appointment, the pediatrician moved through the exam like she was on fire, barely giving us time to voice our continued concerns & leaving the room, exam over.
Oh no, not this time. This time, we held our ground & refused to leave until the doctor came back and, when she finally did, her big test to prove I was riding the new mommy crazy train express was to take her pen, hold it out in front of Julie & ask her to take it. Julianna reached with her left hand. The doctor, did it again to her right side & Julianna reached again with the left hand.The doctors eyebrow went up, just a little. The pediatrician, repeated this several times, silently took out her prescription pad,wrote a referral for a neurologist, handed it to me - anything she may have said after that, no longer mattered
It took 6 weeks to get an appointment with the neurologist & another 2 weeks to get an MRI. Let me tell you, when the phone rings at 10 a.m on Saturday morning, during Memorial Day weekend, and you realize it’s the neurologist himself, not his service or office manager, but the doctor himself, you already know how it's going to go.
He said “I have good news and bad news. The good news is you’re not crazy or imagining the what you’ve been seeing but the bad news is, I wish you were. I’m sorry to tell you Julianna’s MRI shows she suffered a left middle cerebral arterial ischemic infarction - a stroke – and what you’ve been seeing are the effects; hemiplegia cerebral palsy.
A stroke, when? I asked, silently devastated that I missed my own baby having a stroke. Unfortunately, the stroke is already so old it’s not possible to tell you when it happened, it's presumed perinatal
"Her stroke was already so old"
She wasn’t even 1
OK, I said, not really convinced I didn't somehow miss it happening right in front of me, now what do we do next to help her? He gave me the next few steps. Funny, I woke up that Saturday morning with this to-do list for Julianna:· Finish Planning 1st Birthday Party
And by 11a.m. it looked like this:
Continued in Our Blog
How is pediatric stroke rare when the condition it causes is most prevalent of childhood disabilities?-peeve of ours.
Why, because it doesn't make sense and the numbers don't add up.
Cerebral Palsy is caused by brain malformation or brain injury, before, during or after birth, in infants, toddlers and children to age 5. It is the most common childhood disability in the U.S. affecting approximately 1 in 300 kids and never refereed to as rare.
Spastic Hemiplegia is the most common type and form of CP, accounting for 80% of all cerebral palsy cases.
Pediatric stroke is the primary cause
How is pediatric stroke rare when the condition it causes is the most prevalent childhood disability?
Your generous donation will fund our mission to make possibility of possible happen for children with disabilities
Stories about pediatric stroke, cerebral palsy and all childhood brain Injury causes and effects, co-occurring conditions and a variety of other stories, on and off topic.