Your vision is perfect I was told when I went for my annual eye appointment. I have never had a visual issue and have always seen things perfectly; things that were right before my eyes, and even things that were a distance away. But, I was blindsided when my second child, beautiful Hailey, was born.
So many people have visions for their futures. Mine was always to get married, become a teacher, have children, maintain my close relationships with family, and keep and gain good friends to surround ourselves.
My path was following in that direction and I could not ask for more. But on February 26, 2020, everything changed and it all became a little blurry. My daughter was born into this unclear world where Covid-19 was spreading across the globe, and inching its way into ours. The second that I saw my baby girl, I knew that she would be traveling a different path than the one I have paved for her in my mind.
After months of wandering from doctor to doctor, she was given a rare diagnosis of Jordan’s Syndrome: a random mutation on the gene PPP2r5d. Jordan’s Syndrome is very complex; it can affect each individual differently. Hailey experiences Hypotonia (low muscle tone), Seizure disorder, and developmental delay. But that does not stop her from smiling, giggling, and working hard every single day to push through her obstacles.
After her diagnosis, simply put; I was lost. I felt isolated, alone, and truthfully, I was grieving. Hailey was so lucky to have the support of an amazing team of teachers and therapists who push and love her like she is their own. There was no hesitation from anyone the day she was diagnosed- she will get whatever she needs and whenever she needs it.
People often ask me how I do it. How do I manage her therapy, her doctor appointments, and still maintain a semblance of normalcy for my 4 year old son and immediate family. It takes work and it sure is hard. I had to work hard every day to focus on the positives.
I still needed something. I needed support.
That is when I found my virtual, extended family on the internet. I never thought my strength would come from people whom I have never met in person. I found a new pathway- a Jordan’s Syndrome Facebook group, families on Instagram sharing their stories about their child or their own rare diagnosis, and an army of strong as hell women.
Navigating this confusing journey alone would be an arduous task, but I am so fortunate to have found my tribe expanding from here In New Jersey to the other side of the world.
My eyes have been completely opened, and every time I blink, I see new possibilities for my child, my children, my family, and humanity.
-Written by Michelle Fruhscien-
www.Mamabearforrare.com (blog)
www.Jordansguardianangels.org (Jordan’s Syndrome page)
To learn more about Jordan's Syndrome and support research and families, head to www.jordansguardianangels.org