Being Nathan’s sibling is one of the sweetest gifts life has blessed me with. Nathan and I are full biological siblings, so we share more DNA similarities than any of our other siblings.
To share so much with one of the bravest, strongest, and most resilient people on earth is an honor. However, it has always left me with a feeling of unbalance to know that the person I am more like than anyone else, I have watched have more struggles than anyone else. I have had virtually none, and have always wondered, “Why did God choose Nathan?” No matter what justification I try to come up with, this will always be an unanswered question. Between Nathan and my parents, the world has been educated, science has been impacted, and a path has been paved for those diagnosed with WAGR in the future. That makes me very proud of my brother.
A sibling’s perspective is different. We see our parents sacrifice and juggle to make everything work, and ours did just that. Christmas music year around was welcome, finding bridges to ride across every day was embraced (to the point we all became RV’ers). The fact our parents made the decision to be happy every day made our lives joyful. As a young sibling, being helpless during hard times is confusing, but witnessing my parents educate, advocate, and be patient and strong, has allowed me to feel, that as an adult, I am able to do that for Nathan.
I know I could never be as brave or strong as Nathan, and I also know I will never impact the world like he has. I know I can bring Nathan joy and show him love, and that makes me feel like my role as a sibling is a very important one.
This is Selma. She is 1 year and 8 months old and lives in Norway with her mom, Andrea, and her dad, Simen. Selma is a very active and happy girl full of joy for life who loves to be with oth…
This is George. He is 6 years old and lives in the south East of England with his brothers Zachary (5) and Jacob (8).
George is such a light in our lives. He loves nothing more than listening…
Mia lives in the USA and is 2 and a half years old. She has two rare syndromes called WAGR-O and Potocki-Shaffer. Mia was diagnosed blind at 6 months old and at 10 months they gave us genetic…