You are not alone in carring your child with a rare chromosomal disorder to term. This is what Hannah’s mom has to say to parents who have been given an adverse prenatal diagnosis of a rare chromosomal disorder:

“We could have listened to those doctors that told us to leave her alone and let her die but we chose not to. Instead, we surrounded ourselves with professionals with the same goals for her that we have, people who are willing to fight for her and I would never give that up. Further, we have learned a lot about life through her eyes. We have learned to be thankful for the little things in life and we find a lot more joy in all of our children's developmental milestones because we know that each one is a blessing and not something to be taken for granted. We are truly blessed to have Hannah in our lives!”

rare trisomies
 
rare trisomies
Rare Chromosomal Disorders:
Hannah's Story
 

Rare Chromosomal Disorders:
Sophia's Story

     
 

Rare Chromosomal Disorders:
Gus's Story

 

Rare Chromosomal Disorders:
Carsen's Story

     
 
Rare Chromosomal Disorders:
Samuel was diagnosed triomsy 13 moasic by amnio, however triomsy 13 was never found in his body.  At 18 months old he was diagnosed with partial monosomy 5q.

Samuel's Story
  Rare Chromosomal Disorders:

Gunnar's Story
     
 
Rare Chromosomal Disorders:

Lisa's Story
  Rare Chromosomal Disorders:

Mariah's Story
     
   
Rare Chromosomal Disorders:

Hannah's Story
   

If you have a Rare Chromosomal Disorders story to share, please submit it to us by contacting mary@prenatalpartnersforlife.org.

The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.

 

Rare Chromosomal Disorders Links:

Rare Chromosomal Disorder Support Group