Meet The Founders
The founders of the Family Support Village met in the halls of Nicklaus Children's Hospital...
Stephanie Davis and Alysia Peddy are the founders of Family Support Village™, a free resource for parents of children facing medical, behavioral, and learning challenges.
Stephanie and Alysia met in the halls of Nicklaus Children’s Hospital (formerly known as Miami Children’s Hospital) each fighting for the health and recovery of their young children. Bound by their children’s unusual health circumstances and mutual medical team, the two families quickly formed a deep bond. Months turned into years of supporting each other during unthinkable times, encouraging each other during heartbreaking decisions, and lifting each other up when life-changing results were nearly too much to bear.
Their children’s lives took different, devastating, and life-altering paths.
For Stephanie, it was the realization that her previously healthy child, Olivia, was facing a very rare, degenerative disease, which was causing her to deteriorate neurologically, physically, and cognitively. The only known, effective treatment was a radical brain surgery to stop the progression of this insidious disease, known as Rasmussen’s Encephalitis . After already enduring four previous brain surgeries, it seemed impossible to comprehend that Olivia would undergo yet another, even more aggressive, surgery. This extreme surgery nearly eliminated the 100+ seizures she was experiencing daily, but completely paralyzed one side of her body, took away partial vision in both her eyes, and resulted in various cognitive processing deficits. A life-changing surgery indeed, with countless, lifelong secondary effects.
While Stephanie’s family helped Olivia face recovery and rehabilitation, Alysia’s family was fighting a different battle; one that eventually would encompass not one of her children, but two.
Nothing could have prepared Alysia for what was to come when her 2-year old son, Pierce, experienced his first seizure and was quickly diagnosed with Epilepsy. Pierce’s condition rapidly deteriorated when the seizures became relentless and catastrophic. The only way to protect her young son from cluster, non-stop seizures, was to have him placed in a medically induced coma in an attempt to break the seizure cycle. For nearly six, long months, Pierce never woke up, never opened his eyes, never smiled, but still seized. Pierce eventually would endure a brain resection, collapsed lungs, pneumonia, hydrocephalus, osteoporosis, a tracheotomy, and a VP shunt placement. Pierce is now 100% dependent for his daily care and requires around-the-clock nursing to support his needs.
The odds seem nearly impossible, but life had yet another curveball to throw at Alysia and her family. Ten years after Pierce’s initial diagnosis, his three-year old sister, Albry Ann, began having multiple types of seizures, some requiring emergency intervention. Complicating her prognosis even more Albry suffers from a severe form of Apraxia, which affects her ability to communicate verbally.
Often times the challenges and heartbreak seemed overwhelming, but Alysia and Stephanie continued to support each other, offering one another comfort, humor, and hope. Numerous times over the years they vowed to create something for others that was not available to them.
During a very dark time in Olivia’s illness, Stephanie swore that if Olivia was ever on stable ground again, she would try to make the biggest positive she could out of all the negative her family was living. At the time, she didn’t know what it would be, she only knew it WOULD BE. Eventually, Stephanie became a Certified Professional Coach, Author, and Speaker. Focusing on the complexities of health-related concerns, Stephanie founded Premier Medical Coaching which offers personalized individualized attention for patients and their families.
While Stephanie grew her coaching practice, Alysia focused her energy on reaching out to others on a volunteer basis. Alysia created an Epilepsy outreach program called Grace’s Hope, named after her oldest and only completely healthy child. Grace’s Hope sends a trained volunteer to meet with parents of children newly diagnosed with Epilepsy; providing them with an Epilepsy care package, including important resources for moving ahead.
Together, the Stephanie-Alysia team became HOPE Mentors for the Epilepsy Foundation of Florida, political advocates, event volunteers, fundraisers, and personal mentors for people facing neurological disorders and chronic complex sufferers. While their work was satisfying and helpful, they felt it wasn’t enough – they wanted to make a bigger impact. Realizing their one-to-one work wasn’t an efficient way of helping a larger number of families, the two combined their methods to create something much more significant for a larger number of struggling parents.
Now emerges...the Family Support Village™
A message from Alysia and Stephanie...
While we both loved our various medical teams and are grateful for their expertise, knowledge, skill, and kindness over the years – we felt something was missing. Our children were medically being cared for as best they could we were certain of that – but we fell through the cracks. We, as parents, were dying inside and needed help. We needed support. We needed to know that we were doing the best we could. We could’ve used some real-world advice about how to parent our ill child, how to keep our well children feeling as normal as possible, how to support our spouse, and how to manage the complete sadness and upheaval bestowed upon us.
We needed something we didn’t have and couldn’t find anywhere. At first, we found it in each other; trying to cheerlead and coach each other through unthinkable situations and heartbreaking results. As the years went on, we took different paths of trying to heal ourselves, our children, and forge a new life with the set of cards life dealt us. We learned a lot and want to share it with you to maybe make your journey a little bit better; to help you feel strong, to let you know it’s okay to be weak, and to realize YOU need to feel peace and take care of YOU too!
In writing our book, Parent's Hope, it brought out tremendous emotion for each of us. We began reliving heartbreaking days, questioning past decisions, unearthing feelings we thought we had buried…. we dug in anyway. We wanted you to know that how you may be feeling is likely very normal, we want you to believe that you CAN lead yourself and your family through uncertain times and still live to smile, laugh, and talk about it. Life may be challenging and a wild ride you never expected or thought you could handle…… but we are living proof that you can and you will!
Through our children's journey, we had to learn to live, lead, and recover from the ongoing crisis that we were living. It’s actually an ongoing crisis that still continues today; every day in one fashion or another. There is a common thread that runs through both of us and all the Power Parents we have talked to and interviewed over the years. Over and over, these are the messages that have kept shining through:
- We created a new normal for ourselves and our families.
- We recreated who we were and how we looked at the world.
- We redefined relationships and our outlook for the future.
- We shaped our other children to understand things they wouldn't have known otherwise.
- We developed skills that seemed unattainable in our former lives.
- We have learned from meeting and knowing people stronger and wiser than ourselves.
- We have challenged ourselves way beyond our usual comfort zones.
- We have become stronger leaders while allowing ourselves to be weaker than we like to admit.
- We are often scared shitless that something is going to get worse.
- But, through it all, we persevere. And you can too!