He was 18 months old. Lethargic, clingy and a far cry from his usual self, Owen lay at his mother’s feet. With every carry back to bed, Owen returned, curled into a small heap at the base of his mother. “No matter how many times I carried him back to bed, he just wanted to be near me to sleep,” Tiffany explains.
The next morning was Mother’s Day. Owen’s eyes had swollen shut. Concerned and scared, Tiffany and Thomas Straight took their son to the ER where he was given a dose of steroids.
The initial diagnosis was "food allergy" but, by the end of the day, despite medication, Owen continued to swell. His breathing became labored and it became painfully clear that this was not a common food allergy as they had been previously told.
Owen was transported by ambulance to a Children’s Hospital and diagnosed with Nephrotic Syndrome. Paralyzed by fear and perplexed by a diagnosis foreign to her, Tiffany prayed as she fell witness to her son fighting for his life.
“He was given immediate oxygen because his lungs were giving out and his heart rate was dropping. He had pneumonia and, because of the increased fluid caused by Nephrotic Syndrome, the fluid was spilling into his tiny lungs.”
After two long, emotional weeks, Owen was discharged home - which meant discharged from the readily available assistance of nurses and doctors. Tiffany and Thomas were left exposed and fearful in managing the daily nuances of life after such a life-changing experience. “Being discharged after a diagnosis like this for your child is a frightening feeling when you get home. You feel empty and alone.”
Holding it together by day and succumbing to her emotions by night, Tiffany forged forward, wiping tears and researching all that she could about Nephrotic Syndrome. She soon learned that Nephrotic Syndrome - Minimal Change Disease is a rare kidney disease that causes too much protein in the urine. The increased protein levels can cause swelling, foamy urine, fatigue, and high cholesterol. She also learned that the medication used to manage the disease was not without its side effects too - high blood pressure, mineral deficiency, and emotional outbursts, just to name a few.
“At this time, there is no cure for what my son has, just medications to manage it,” says Tiffany. At three years of age, Owen is steroid dependent. “The goal is to get him off steroids, but at the same time, steroids are the only approved medication to control the symptoms of Nephrotic Syndrome.”
Tiffany explains that Owen is admitted to the hospital on average twice a month in addition to weekly follow-ups and lab draws. “Children’s has become our second home. I feel like Owen and I actually spend more time there than we do at home.”
As Tiffany was drowning in a sea of exhaustion, anxiety, and stress, she found a beacon of hope. She explains, “I remember one parent I met in a Facebook group told me not to let this diagnosis ruin me. And that is exactly what I was letting it do. It was stripping me of my happiness, my sanity, and my sleep.”
Enter NephCure, an organization dedicated to the progress of rare kidney disease research, funding and the support of families facing rare kidney disease diagnoses.
Tiffany began funneling energy into connecting with other families who had children with Nephrotic Syndrome. What started as a search for support became a much-needed source of strength and a call to action.
Tiffany now leads the Dallas volunteer committee in raising awareness, building strong partnerships with sponsors and patient families and raising funds for annual events. This past November, their team raised $12,000 towards the cause of finding a cure.
With a full heart, Tiffany shares, ”What I choose today for my son’s treatment plan is going to determine his future health and livelihood. It is important to equip our children with the strength and tools that they need to survive in this world. Owen's "survival tool belt" is a little bigger than other children, with a whole lot more tools... and that's okay.”
One of the survival tools on Owen's toolbelt has been Generation Mindful’s Time-In-ToolKit. Tiffany explains that she began using the ToolKit with her daughter Oliva to help her notice, name and tame her big toddler emotions.
With the help of the play-based tools in the ToolKit and with guidance from her parents, Olivia began to grow her social-emotional skills, learning how to be with and regulate her feelings. Because of this, Tiffany and Thomas decided to use the tools with Owen as he was approaching toddlerhood, too.
Communication and managing emotions is a big job for children and adults alike, but it can be made even more challenging when medication to control symptoms of chronic illness have side effects that include emotional outbursts. Owen's parents shared that they initially had no idea how challenging it would be to manage the emotional challenges Owen would experience due to his syndrome and steroid treatments.
Tiffany states, “Not only do our little ones not understand their big emotions due to toddlerhood, but the steroids were making it even harder for Owen to understand why he was feeling this way - so out of control, angry, etc, - at times, even in the middle of playtime. All of this proved to be pretty overwhelming for him.”
Tiffany shares, “The Time-In-Toolkit has been great for my family. If we don’t make noticing and naming emotions a family focus, we see more challenging behavior. And when we do make time for it, we have better days.” She continues, “Helping Owen identify which emotion he might be feeling and helping him to decide himself which strategy will work for each specific emotion has helped ward off countless random meltdowns, which had become pretty common.”
The Time-In ToolKit has also been helpful for herself too. Tiffany admits, “It is a good reminder to express my emotions in a positive way on the days my patience is running on fumes. There is always someone watching and listening!”
As a powerful advocate for her son and those living with chronic illness, Tiffany reached out to Generation Mindful (GENM). She saw an opportunity of partnership in bringing GENM tools to life for families with children living with a chronic illness.
“These tools have helped my family in so many ways," shared Tiffany, "and I know they could help others too.”
When asked how she feels GENM tools can help other families of children with chronic and/or life-threatening illnesses, Tiffany shared that The Time-In-Toolkit and SnuggleBuddies plush toys offer children a safe way to share their emotions and to express the stress that comes with being a toddlerhood/child, in addition to helping children and families manage the uncontrollable effects of medication.
“As I see it, there is an opportunity for hospital staff to use these same tools with children as well. The ToolKit is full of tools that allow us as adults to playfully check-in and to ask even the littlest of patients not only how they are doing but also how they are feeling. For me, these tools are a great way to check-in with my child and to help them feel safe.”
Nephrotic Syndrome may be part of Owen’s journey but it does not define him. Behind his big brown eyes, the playfulness of a toddler and the bravery of a warrior. “Owen is a growing and energetic toddler with a sense of humor, compassionate heart, and gentle spirit.”
Tiffany has vowed to keep the diagnosis from defining her too. “I won’t allow Owen's diagnosis to rob me of my joy in celebrating motherhood or Mother’s Day, which was the day Owen was diagnosed, but it has definitely become a marker for my family. It was a Mother’s Day I will never forget and a day that I really had to show up as a mother and to be strong for my family.”
Having a child with a chronic illness has reinforced for Tiffany what it means to be a mom/parent:
- Trusting in her mama (parent) intuition.
- Advocating for one's child, even in the face of resistance and/or exhaustion.
- And love. So, so much love. The sort that carries you.
These are the things that keep Tiffany going, especially that last one. Love.
“I will keep educating the world because having a rare kidney disease is only rare until you know someone who is diagnosed.”
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