Raising Strong & Rare

by | Jul 21, 2022 | Rare disease world

This week’s blog was written by the wonderful Victoria Arreola, Founder and CEO of Strong and Rare Parenting. Victoria shares her personal Strong and Rare journey, how she took civic action, why she created her podcast and more. She leaves with a vital message that deserves your attention.
Hello Everyone, I am Victoria Arreola, Founder and CEO of Strong and Rare Parenting, a mother of two strong, intelligent, resilient boys, advocate, philanthropist, and speaker on equity, diversity, and inclusion in all things Autism, ADHD, and Rare diseases. In this blog, I will be sharing our Strong and Rare journey and the founding of our podcast show.

Our Strong and Rare Journey

Our Strong and Rare journey began 7 years ago when my second-born received the diagnosis of Sprengel’s Deformity (SD) and Klipple Feil Syndrome (KFS). For those unfamiliar with Sprengel’s deformity, it is a rare congenital deformity that results in the elevation of the scapula and Klipple Feil Syndrome is an abnormal joint fusion of two spinal bones in the neck. These two correlate with each other. Like many rare diseases, each diagnosis has caused other internal organ abnormalities. Shortly after receiving our rare disease diagnosis from my second born, my firstborn received the diagnosis of Pectus Excavatum (PE), an abnormal breastbone condition that sinks into the chest, affecting the heart’s function and lungs. As you can imagine, going through our ‘rare’ journey was challenging, frustrating, tiring, and overwhelming. On the other hand, it has brought many different positive outlooks on life.
It took several years to receive the proper diagnosis for both of my boys. It seemed that each time we would visit the doctors or have new scans (i.e., MRI, x-rays ) and follow-ups, we would receive a new diagnosis. It all started with the torticollis diagnosis when my little was referred to Physical Therapy when he was just 4 months old. From then on, our journey began. After several months, Sprengel was officially diagnosed, and we were then referred to occupational therapy to help his mobility, as it was limited at the time. And from then on, we continued to receive new diagnoses each time.
A year and a half later, our neurodiversity journey began. Speech-Language was the starting point that led us to know about Autism and Attention Deficit Hyperactivity Disorder (ADHD). My second-born started with weekly speech-language therapy sessions. A year after our sessions, the therapist was referred for an ASD evaluation. We received the confirmation of ASD and moved into an early intervention to support his needs. In the same timeframe, after answering multiple ASD questionnaires, my intuition led me to advocate for my oldest son. Considering my concerns and intuition, this mama was not wrong. We received our second ASD diagnosis and moved into receiving the services.
Three years later, as time progressed, we were referred over to get an ADHD evaluation, and that was when we received our third new diagnosis. Going through multiple evaluations and medical appointments was exhausting and felt unreal at times, to say the least. I went through a grieving period of the rare parenting journey. I was in so much disbelief. I cried many nights and days because I was confused as a parent. As time progressed such periods of our lives became a thing of the past because once I accepted that this life is our “ normal,” everything began to feel different. Our life consists of therapy sessions, doctor follow-ups, and multiple tests that, with time, we became more resilient to all things Rare and Neurodiversity. Now, we are in a steady stage in our lives. My boys receive the services that they need, and we periodically take a drive to see our specialist. This life is ours, and I could not be prouder because it has built up grit for our family.

A mama into civic action

During the first stages of our early diagnosis journey, I researched each diagnosis daily. Consequently, I found strong Facebook groups for each rare disease and connected with them, which led me to continue the work of becoming a strong advocate for all rare diagnoses and Autism and ADHD. I joined Rare Disease Legislative Advocates (RDLA).

When I joined the RDLA – I had no idea what I was doing to say the least. All I knew was that I needed to advocate for my children because all the research I had done about each rare condition, SD, SFS, and PE, was incredibly rare. I took part in what is known as Rare Across America, which is organized meetings for rare disease advocates with a member of congress and /or their staff with the Member’s in-state district office.

In the meetings, I shared our rare disease journey and the importance of taking action on policies that support our rare community. One of the policies we were asking for support for was Newborn screening (To learn more, visit HERE). The experience was powerful, and it is still now because every voice matters.

Story Behind the Podcast Name

Inspired by Rare Diseases, Neurodiversity, Civic and social experiences, I founded the Strong and Rare Parenting podcast to increase awareness, acceptance, and inclusion for our children and community. The podcast was established in February 2021 to elevate the stories of many families and share resources from experts in the field who support our community. As a special needs and rare disease parent, I have seen and felt the challenges we all face as what I call Strong & Rare parents. I felt the need for this because although we feel like we are alone, we are not alone. We’ve been hiding in the shadows because there is so much stigma around raising children on the spectrum, neurodiversity, and rare diseases.
There are so many misconceptions yet not enough acceptance and inclusion. The Strong and Rare movement supports these efforts to be the change we need to make a difference for our children and future generations.

I believe that everyone has an empowering story. We can all take a stance in being a voice for our children, or if you are living with a rare disease, you can be the change our community needs. Remember always that your voice matters.

Letting go of Expectations

As you have read, being Strong and Rare parenting has many challenges, yet there are many rewarding parts that no one could ever take away. My expectations of parenting went out the roof years ago, and I do not regret that. Let me tell you why – Being part of the rare and special needs community has brought me so much joy as it has sometimes brought confusion. I have learned through it all and after speaking with multiple families that we all have one thing in common. And that is the sense of strength, resilience, and grit.

If you are a parent like me, you know how much strength your children bring you. If you are a rare patient, you have also built on your muscles of strength to overcome all of the obstacles that have come your way. We also share the love and understanding of our rare journey. Although we might feel like our rare journey is small, we are all a community and can support each other no matter the distance. We are all One family. My last thought is that we should continue to raise our voices and take action to be the change we need to see worldwide for our rare community.

Message to all parents

Always follow your intuition. You know your child more than anyone else. You are the voice, the guide, and grit for your children. Follow your heart that all will fall into place at the right time. This journey might feel never-ending at times. There will be days when you will feel like there is not much more you can do but know that a strong community will understand and support you no matter what. It takes a step to reach out and be that VOICE your child needs you to be for them.
Should you want to connect with me, we are on most social accounts Instagram @Strongandrareparenting, Podcast Show, TikTok @StrongandRareParenting, Facebook HERE, Twitter.

Email: media@strongandrareparents.com