“F is for Family”: Sibling Lessons & Love


by Maggie and Jack Jennison

Hi! My name is Maggie Jennison. I’m sitting here at Texas Christian University in Fort Worth, Texas with my older brother, Jack. We may be 1,400 miles away from our home in California attending college together, but our hearts are never far from our younger brother and sister, Charlie and Jane. Some older siblings might be happy to have space from their annoying little brothers and sisters, but not us!  We love hanging out with Charlie and Jane and we are proud to say they are ours. They are determined, happy, faithful kids who have made us better people. Some might say that, as older siblings, we are the role models. But, Jack and I feel it’s the opposite. Charlie and Jane are the ones we look up to. Their pure view of the world has taught us lots of life lessons like to always find the good in others, to not judge people, to show up each day with 100% effort, and to show love always.

When we were younger, Charlie and Jane seemed to go to doctor appointments and therapies literally all the time. We were happy for the progress they were making, but we also remember feeling bad for them – and for us. Seeing everything they had to do just to learn how to eat, walk, and play was frustrating and so was seeing our parents devote so much time to them. Now that we are older, we can see that all of their persistence and hard work, along with their constantly positive attitudes, has paid off more than we ever could have imagined.

Brother-to-Brother (from Jack’s perspective):

When I was young, I always envisioned having a brother I could wrestle with, play football with, and joke around with… Charlie has become exactly that brother. While getting to this point is not exactly how I thought it would be, I would not trade a single thing. Charlie’s optimism, courage, and ability to light up a room are second to none. Charlie has not only impacted my life, but the lives of my friends too. He seems to always be the topic of conversation, whether he is hanging out with us or not. My friends admire his attitude toward life. He is a kid that naturally lives each day to the fullest which is something most people have to work at doing. Charlie has overcome big obstacles – physically, emotionally and cognitively. When I see him doing Algebra, playing ping pong, or belting out every word to a song, I am always amazed at how far he’s come. He is a dawg and he is my brother. I am so thankful for all the great times we have shared together and look forward to many more in the future. I love that kid with all my heart.

Sister-to-Sister (from Maggie’s perspective):

When I was a little girl, I begged and begged my parents for a little sister. Finally, my biggest wish came true the day my little sister Jane was born. I remember holding her for the first time and dreaming about the day I could paint her nails, take her shopping and have sleepovers with her. That’s what I thought having a sister was all about. While those little dreams of mine have come true many, many times, I’ve learned that having Jane as my sister is so much more than I could have ever imagined! She has exceeded any sisterly expectation I ever had in every way possible. Jane has a way of making everyone she meets feel important. Even though she may not understand as much as other girls her age, she sure does understand the most important thing and that is to love others and tell them often. Because of Jane, I know how to love unconditionally and try to be like her by spreading kindness wherever I go. And that girl knows how to have fun! She loves music, singing, dancing, telling jokes, and sending me the best text messages and pictures! Jane has become like a little sister to so many of my friends. I love that so many others get to feel what it’s like to have Jane light up their lives like she does mine. She’s come a long way in her 11 years of life. I am really excited to be by her side as she continues to grow and develop. I am sure we will be laughing our way through life together.

When we are asked what it’s like having siblings with a rare disease, without hesitation we can honestly say it is a blessing! It hasn’t always been easy, but in the big scope of life, Jack and I both agree it’s made our family, “Team J”, as close as can be because Charlie and Jane are constant reminders to appreciate and be thankful for everything, mostly each other. We are also grateful for the Wilseys who are setting an example for us as future entrepreneurs. The innovative ways of the Grace Science Foundation has opened our eyes to science and genetics. We are fascinated by everything their team of scientists and doctors have done and continue to do in their work to find a cure. When we attended the GSF Scientific Conference in 2017, we met so many amazing researchers and other NGLY1 families. It’s pretty cool to know our family is a part of something special. We are inspired to one day find a way to help make a difference for the whole amazing community that is NGLY1. For now, we thank God for Charlie and Jane who are just as much our best friends as they are our little brother and sister.

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