The story of Anahi
In 2021 I found I was expecting twins Mateo and Matias. It was a overwhelming and exiting news,by 15 weeks gestation we found out Mateo had what is called CDH (congenital diaphragmatic hernia) he where he had intestines and liver up in his diaphragm.We learned that our local hospital was not equipped to repair this hernia so we had to travel to UF Shands in Gainsville Florida.As time came close to deliver at 34weeks we traveled 4hrs to deliver my boys.As they were born Mateo’s CDH was repaired but a week later they had no urine output they decided to do some genetic testing and found out they both had Denys-Drash syndrome.Its a syndrome that’s cause end stage renal failure with 90% of developing Wilms Tumor and had to have their nephrectomy to prevent it.We didn’t know what to expect since they gave us the option to let go of Mateo but we decided to give him a chance to fight.Both started pd dyalisis but unfortunately it didn’t work on Mateo and started hemodialysis they were in nicu for 8 months and since then they have some development delays,but worst of all at 16 months Matias was diagnosed with liver cancer and since then it’s been more complicated.We try everyday to fight this rare syndrome and it’s complications and hopefully we get closer to transplant.I also am trying to bring awarness to their syndrome and try to get people to see their journey.