The Best Parts of Being a Rare Mom


Whether you’re a mom living with a rare disease or parenting a child with a rare condition, we all know the road is paved with numerous doctor appointments, days of feeling unwell, and diving into the medically unknown — all while trying to be the best parent you can.

This Mother’s Day, we collaborated with Global Genes to ask our rare communities: what’s the best part of being a rare mom? We want to take a minute to recognize each and every one of you. We appreciate the work you’re doing as advocates and parents. You’re amazing. Never forget it.

1. “The best part is watching myself become a stronger person, and celebrating all the joys.” — Allison K.

2. “It’s great being able to watch our children overcome every obstacle thrown at them.” — Allison S.

3.My illness has taught my 5-year-old to be more compassionate to people who are ill. He is such a kind caring child. He loves me when I’m sick or well. I’m his ‘zebra.’” — Stacy A.

4. “The best part is seeing their unbelievable strength and watching them grow up as happy, caring, and compassionate people.” — Melinda P.

5. “The best part for me would be having the opportunity to raise such a brave, resilient little boy. He is only 1, but he’s been through surgery, several procedures, hospitalizations, and tests upon tests. He continues to be the happiest boy I’ve ever met. He’s always smiling, even when he’s down with another infection. It’s hard having to watch him go through everything, but he doesn’t let it stop him.” — Randi W.

6. “It’s having the appreciation for the small things as well as the perspective that being rare mamas (and papas!) gives us.” — Danyelle S.

7. “I am so inspired by my child’s incredible and indelible spirit in the face of numerous challenges. He is my amazing, joyful warrior-child.” — Leslie L.

8.It’s having the ability to take nothing for granted as you love your child through every obstacle and triumph.” — Shelby L.

9. “The best part of being the mom of a child with a rare disease is being moved to be stronger than you ever thought possible. When my daughter was first diagnosed with cystic fibrosis at 8 months old, I was afraid I wasn’t up to the challenging task of caring for her. Years later, I have become a caregiver and advocate for my child. I believe being the mom of my beautiful rare daughter helped me be a better me.” — Beth V.

10. “I love all the things I learn from my kids. There is a courage that continues to grow inside of me to be a better advocate for myself, my family, and others. We have dance parties to celebrate all the victories – whether big or small!”– Alicia K.

11. “I have learned acceptance, patience, and unconditional love. Having our own ‘rare’ normal lives is the best part because our journey is unique.” — Maira D.

12. “The best part is seeing all the little things again we once took for granted: the sun through the trees, the reflection on a passing truck, the wind blowing in your hair. Tobias notices all this and laughs so loud it makes us laugh as well. He makes everything better.” — Veerle V.

13. “My daughter never got to know me as ‘healthy’ and because of that we have a great bond.” — Tiffany T.

14. “We celebrate the tiny accomplishments most take for granted. My eyes opened to what really matters in life. The best part is getting to be the mom of someone ‘rare.’” — Cindy M.

15. “My daughter has been a living testament to me. I am in awe of her positivity and unbreakable spirit. She thinks I hung the stars and moon around her and tells me I’m the best mom ever when she doesn’t know the fear, hope, anxiety, and loneliness I have struggled with in this journey. She humbles me. She makes me a better person and she gives me hope where I once had none.” — Ashley C.

16. “Being a rare mom is about being able celebrate the times when your child is not sick. You strive to get answers for your child’s illnesses and try to make sense of it. It means staying up late into the night to read research publications on your child’s rare disease in order to get a better sense of it and be an advocate for your child. But most of all, the best part of being a mother to a child with a rare disease is taking a journey that’s full of love, compassion, and understanding for your child.” — Melissa C.

Are you a rare mom? What’s the best part of your parenting experience? Let us know in the comments below.


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