It has been a heartbreaking, stressful, and very emotional pregnancy for our friends Tiffany, her husband Hayden, and their two young boys. Early in this pregnancy they were not sure if baby girl would even make it to this point. She has already proven to be a tough little girl!
After meeting with many doctors, they have diagnosed this little angle with a very rare genetic disorder called Marden-walker syndrome.
Her lungs aren’t fully developing and in the last four weeks she has gained less than a pound. She will be welcomed into this world in a short 4 weeks, and they are guessing she will only weigh 4lbs. She will have to remain in the NICU for months, not sure exactly how many. The next 4 week they will be traveling back and forth to Iowa City for appointments and stress test weekly here in Des Moines as well.
With all of this going the bills are starting to pill up with her not able to work and Hayden taking off work to be there for tiffany and his baby girl. It’s starting to add up with traveling this much to Iowa city and back. I’m asking you all to please help take this stress away from them, this is a stress we can help take away from them. Any amount is greatly appreciated. If you can’t donate, please please share!
Marden-Walker syndrome (MWS) is a genetic condition affecting the connective tissue. Features may include distinctive facial features, a cleft or high-arched palate, a small or receding jaw (micrognathia), fixed bone joints (contractures or arthrogryposis), and growth delay. Other symptoms may include a mask-like face with a narrowing of the eye opening (blepharophimosis), low-set ears, failure to thrive, and a generalized slowing down of physical reactions, movements, and speech. The cause of MWS is unknown. A few individuals have been found to have a PIEZO2 gene that is not working correctly. It is likely inherited in an autosomal recessive pattern. This condition is diagnosed by a clinical exam and other medical tests.Less then 50,000 in the U.S have this disease