Editor’s Note: We are honored to share this story from our friends at CURE SYNGAP. To see this article in its original format, please click here.
Porter is one of Jansen’s two older brothers and closest to her in age. He is 18 years old and a rising high school senior. In the past, Porter supported his parents, Suzanne and Brent Jones, with two Syngap Soiree galas, and he held CURE SYNGAP1’s first Sweets for SYNGAP1 doughnut sale.
The SYNGAP1 Burden
Jansen is 2-½ years younger than I am, so I don’t remember growing up without her. Having her as a sister has always made my life seem abnormal as compared to my friends’ lives.
Her outbursts can embarrass me and are the reason my parents have missed many of my sports games. She’s also kept us from spending time with other families. That’s hard. I am sad when we can’t go out to dinner at normal times or when our parents split being out with me because one has to put her to bed and watch over her. Jansen also makes it difficult to go on vacations because there are only certain activities she enjoys and can do.
I feel like my family is often on high alert since there’s the constant worry about a “Syngap snap.” My parents – and I – know that any misunderstanding could trigger a complete meltdown. Instantly. Without warning. Hissing, spitting, biting, cussing, raging. Why? We’re often unsure. At these times, I try to save lamps and breakables or just stay out of the way. On a positive note, I have learned to read Jansen’s moods and predict how she may react.
Both the Middle Child & Jansen’s Protector
Being the middle child can be difficult as I sometimes feel forgotten. At other times, I am the child being depended on by my parents. I will play with Jansen or watch over her when needed. I’ve gotten better at entertaining Jansen over the years. She especially loves playing swim games, jumping over/under in the ocean, and eating ice cream together.
As my sister has gotten older, my parents’ concern for her safety and well-being has not lessened. Even though she’s a teenager, I know to keep an eye on and protect her.
SYGNAP1 Silver Lining
Because of her, I’d say I’ve learned to be patient as Jansen’s brother and empathetic to those with differences. I also understand that the world has people with all sorts of differences —a perspective I gained well before my peers.
Jansen has helped me become very observant. When witnessing her early speech delays and lack of movement, I picked up on what she was doing in order to get what she wanted. I also learned little signs that helped predict her behavior. This has translated to my life away from Jansen, as I can quickly interpret situations and read people’s moods.
Even though daily life has its challenges, I love Jansen. I love how she has a huge smile when she’s happy. I love seeing her fearlessness. And at times, Jansen is very easy to deal with, which is enjoyable.
My Sister Needs a Cure
I never thought I’d be a rare disease patient advocacy group volunteer or fundraiser. But I also never imagined having a sister like Jansen. Our mom got me interested in raising awareness around and research funds for Jansen’s rare disease in any way I could. I’ve learned that treatment can give Jansen the chance to live a better life. This gives me hope. To participate in CURE SYNGAP1 activism, I have:
- Served at my mom’s Syngap Soiree galas as a silent auction runner and as part of the clean up crew. I also got to raise a paddle during the “Fund the Hope” paddle raise. It was fun to donate (even if it wasn’t my own money!).
- Fundraised directly with Sweets for SYNGAP1. I liked working with my friends, but learned it was not as easy to make sales as I’d expected. I’m proud to have raised $10,000.
- Written this post. Sharing my perspective is uncomfortable, but I know it’s another means of raising awareness.
- Started thinking on my next CURE SYNGAP1 engagement. I’m not sure of my plan, but stay tuned.
– Porter Jones
