Our Miracle Baby! A mother shares her experience with pregnancy and Fibromuscular Dysplasia.

Another of the story in a series of guest blogs featuring patients and families that are impacted by the closure of rare disease research by NIH/NIA. Patients are not satisfied with the response we have received from NIH/NIA. We want to get the message out that closing our research affected people not just numbers in a study.

Meet Nolan our miracle FMD baby. He has been a hero to many young women in the FMDChat community. Nolan's mom is our guest blogger today. We are grateful to mom, Kaitlyn Wisniewski for sharing her experience with us.

Nolan our Hero!

Written by: Kaitlyn Wisniewski

I was diagnosed with a rare disease called Fibromuscular dysplasia in October of 2012. At the time I was 6 weeks pregnant with my second child. 

Nolan turns 1 next month! Happy Birthday Nolan, you are loved by many!

The FMD had caused a chain reaction of 
renal artery stenosis which caused uncontrollable hypertension. My blood pressure was around 240/140. I was told it was in my best interest to give up the pregnancy because no one knew if the baby would make it to a viable date or if my body could handle the pregnancy. I needed a surgery that I couldn't have until I delivered.  We decided to push our luck a bit and my son and I fought very very hard and made it to 29 weeks! He was born on March 22nd weighing 2lbs 5oz, he is now ten months and thriving! I had angioplasty on my renal arteries and just last week was taken off all of my meds! It's a progressive and aggressive disease with no cure but for now I am winning. Love and hope to all others fighting rare diseases!

Kaitlyn

Kaitlyn preparing for her wedding in 2 months!

Thanks to FMDChat our petition to reinstate our research will be hand delivered in Washington DC by patients on Rare Disease Day! 

Please SIGN HERE