The Desenberg Family Fundraiser
Our Goal: $500:raised $2,535
At 23 weeks pregnant we found out that our son, Logan, was going to be born with CDH. We received very little hope at home and were told that we had only a 30% chance of survival and we should consider termination. We left the doctor’s office completely hopeless. We tried not to Google CDH, but our curiosity and lack of information we received at our appointment took over. What we found online was devastating. At this point, we were trying to come to grips with the fact that our son would probably not survive. A few weeks later we found hope for the first time since our diagnosis and made the decision to relocate from Atlanta, GA to St. Petersburg, Florida for the birth and care of Logan. Logan was born very severe. So severe that his PH score was considered incompatible for life in most places. We did not hear him cry, get the opportunity to hold him, or really even see him before he was rushed out of the operating room and to the NICU. Within the first 24 hours of life Logan had his repair surgery and was placed on ECMO. His 81 day stay in the CVICU was filled with a lot of tears, fear, and joy. To this day, Logan has had 14 surgeries and procedures and we are still battling some complications from his life saving techniques. We are very fortunate to have been able to relocate to a hospital where not only were able to get Logan to survive but were focused on protecting his brain and lungs for the long term.
WHY TINY HERO?
CDH is not a death sentence. Parents who have received the CDH diagnosis should not be met with fear and statistics that demotivate families from seeking second opinions or traveling for better care. Tiny Hero not only provides newly diagnosed parents hope, but they provide financial assistance to families so they can make the best decision of care for their child, whether that is in their home state or across the nation. Since Logan was born, we've watched Tiny Hero go from a small charity to helping a 100 plus families financially and providing a community of hope to hundreds of others in 2018 alone. Together we can make a difference for many more families. Donations go directly to financially supporting newly diagnosed parents get the care their need for their child. Thank you!
HOPE STARTS HERE HOODIE
You can also support our family by purchasing this exclusive Hope for the Holidays item. All proceeds from the sales go towards Tiny Hero. Tiny Hero is a 501(c)(3) organization built to help support families with CDH children.
What is CDH?
Congenital diaphragmatic hernia (CDH) occurs in an unborn baby when there is a hole in, or incomplete formation of, the diaphragm (the muscle under the lungs that is responsible for breathing).
CDH affects about one in every 2,500 babies (1600 cases in the U.S. each year), and occurs as often as cystic fibrosis and spina bifida, yet most have never heard of it. On average, only 50% of these babies survive. Learn more about what is CDH→
Where does my donation go?
Family Grants - We help families get to very best possible care and provide financial aid when needed.
Community Support - We create videos, update our blog and website, and produce printed materials to help expand our message of hope to a larger audience.
Inspiring Better Care - We partnered with the Fore Hadley Foundation to help fund productive research efforts across the country.