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It’s All Worth It: The Positives of Being a Sibling to Someone with PWS

Being a sibling to an individual with Prader-Willi syndrome (PWS) is a remarkable experience. Almost all interviewed siblings agree that the positives of being a sibling to someone with PWS outweigh the negatives and are grateful to have the member with PWS in their family. Almost all the siblings we interviewed have an intense love for and a dear relationship with their sibling with PWS. Many siblings described it as their most special and precious relationship. 90% of interviewed siblings said they enjoyed being with their sibling with PWS. Many siblings reported feelings like, โ€œIt is impossible not to love herโ€ and โ€œshe can always make me happierโ€ (Murphy, Thornton & Thornton, 2019).

Personal Development

Most interviewed siblings reported that being a sibling to someone with PWS has taught them great skills and has aided in their personal development and growth.

Meaningful quotes by siblings:

  • โ€œIt is all worth it.โ€
  • โ€œIt is impossible not to love her.โ€
  • โ€œI feel that her happiness spreads to me.โ€
  • Some of my times with her are the best times of my life.โ€
  • โ€œIโ€™m thankful because he brings blessings and hardships.โ€
  • โ€œI am proud of how far sheโ€™s come even though itโ€™s harder for her.โ€
  • โ€œI am grateful for what she adds to the family.โ€
  • โ€œI love him, and I care about him.โ€
  • โ€œI feel glad he is my brother. Even if he is different it is not in a bad way.โ€
  • โ€œIt is cool to call him my brother.โ€
  • โ€œShe means so much to me. You canโ€™t connect in the same way as others.โ€
  • โ€œI enjoy being with her, I am super glad that she is part of the family.โ€
  • โ€œIt is different from other families but totally worth itโ€.
  • โ€œI love experiencing the world through his eyes.โ€
  • โ€œI canโ€™t imagine my life without him.โ€
  • โ€œI enjoy the super close relationship with her where you can see her humor.โ€
  • โ€œShe is a perfect way for us as a family to get closer. She is the centerpiece of the family.โ€
  • โ€œ99% of the time it is great.โ€
  • โ€œI love being her sister and wouldnโ€™t trade it for the world.โ€
  • โ€œShe is the one person who is so genuine, she means so much to me.โ€
  • โ€œYou canโ€™t connect [with her] in the same way as others, but you canโ€™t connect with others in the same way as her.โ€
  • โ€œShe is pure and innocent.โ€
  • โ€œThe hard times are funny after the fact.โ€
  • โ€œI feel like she can just always make me happier.โ€

References

Murphy, L., Thornton, J., Thornton, E. (2019). Tips for Supporting Parents. Prader-Willi Syndrome Association (USA). Retrieved from: https://ww.pwsausa.org/2019conventionhandouts/

Contributed by Jane Thornton

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