Julius was diagnose with Congenital Nephrotic Syndrome of the Finnish type 1 month after he was born. He was born in Germany on a military base, they didn’t do much testing during the pregnancy so they didn’t catch it. He started showing symptoms when he came home and he was at home for a month. He was taken to the hospital every week because he was getting puffy to the point where his eyes were closed,he was gaining weight too quick, we was never full (he would feed for hours) and his breathing was very heavy.
They sent us home every time he went to the hospital saying it wasn’t serious even though his pulse was high. One day a home nurse (new parent support mentor for single parents) came to the house (valentines day) and noticed he wasn’t breathing normal. So we took him back and he was immediately put on oxygen. (He was respiratory distress O2 levels in the 60’s, respiratory rate in the 90s) blood pressure was 150 and up, they admitted him to the NICU and ran test found fluid in his lungs and a high amount of protein in his urine.
We told the physician the symptoms he had and he diagnosed him that night. He had to fly to Maryland for treatment and was hospitalized for seven plus months and bounced from three different hospitals, his doctors were even contacting physicians in Finland to find out more about his disease and how they can adjust his regimens until they took both of his kidneys out.
This is a small portion of the story, because lord knows he had a lot of trials and errors and some life death situations, he’s come a long way. He’s now 3 and currently awaiting a kidney transplant transplant.
March is the Month to Share YOUR Story!
Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.