Baby Marquart Cystic Fibrosis Fund

Hi, everyone - first of all we want to say how much it means to Joel and I that you are taking the time to read about our little girl. In whatever ways you can support us, please know we are very grateful.

Within the past few weeks, we learned some hard news that Baby Girl Marquart will be born with a rare genetic disability called cystic fibrosis (CF). Like many folks we have talked to- Joel and I didn't know what CF was, much less that we are carriers for it.

Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. There is currently no cure, but treatment options have come a long way and there is a lot of hope in the CF community. We encourage everyone to learn more about CF through the CFF organization . There is a lot of scary information out there that is outdated and no longer relevant, but the CFF.org website is up to date.

The name of the CF game is prevention. This is a lifelong battle. She will be born with CF regardless, but the younger our girl can get access to care, the less damage she will have to her major organs and the healthier and longer of a life she can live. This includes in utero. At the time of writing this, I am currently 26 weeks pregnant and she is already showing signs in the ultrasounds of CF damage to her bowel and we know her pancreas and lungs are suffering as well.

There is a relatively new miracle drug called Trikafta that is life-changing. Baby Marquart is presenting with something called an echogenic bowel, which in her case is just a fancy way of saying that mucus is building up in her bowel. Over time, the echogenic bowel will progress into a bowel blockage that can lead to complicated surgeries as soon as she's born and months in the NICU. If I am able to take Trikafta for her in utero, it will treat this blockage, prevent further damage to her organs, and allow the possibility for her to be born pancreatic sufficient.

Since I myself do not have CF and it's not yet approved for moms of CF babies in utero, our insurance is not covering Trikafta on her behalf. This drug is $26,000 for a one month supply out-of-pocket. We are doing everything we can to appeal this insurance denial and get access to Trikafta, but we've been warned that the denial won't change since I myself do not have CF.

There are case studies showing that babies who have received Trikafta in utero are seeing incredible improvements. With only 2 weeks of in utero access, echogenic bowel is clearing up and these babies are born without needing invasive surgeries and months in the hospital. Some babies are also being born pancreatic sufficient, which means that the life-long pancreas damage was prevented. We believe that in a couple of years, taking Trikafta in utero will be a standard level of care - the healthcare system just hasn't caught up yet to the CF advancements.

In addition to this fight for Trikafta, we have taken on a lot of unexpected medical bills due to the pregnancy complications - extra ultrasounds, a loss of work and income, an amniocentesis, several rounds of genetic testing, a pulmonary functioning test and we know there will be much, much more coming our way.

We are desperate to get our hands on at least a one month (but hopefully two month) supply of Trikafta to help Baby Marquart and then once she is born, our insurance will hopefully cover her since she will then be the qualifying patient with CF.

Whether with words of encouragement or with a donation, we are so grateful for your support. Any donations made will go straight to her wellbeing. We hope for a strong and healthy baby girl and want to do anything in our power to set her up for success.

Much love to you all! Team Baby Marquart!