Our Stories

Ty's Story

Ty's Story


Ty was born on Halloween in 2003. He was a very happy and healthy little boy with no medical problems until June 2007. We first noticed that Ty was putting on weight rather quickly and dismissed it as a growth spurt. Then he started complaining that his legs were hurting him. We contributed this to his swimming lessons. We noticed also that Ty had a very strong fishy smell to his breath. By this time I started to get concerned. Then his eyes became swollen so I took him to the doctor the next day.

A urine test showed large amounts of protein in his urine. We were immediately sent to a Pediatric Nephrologist in New Orleans where he was diagnosed with Nephrotic Syndrome. We were in shock and felt our lives were falling apart. 

Ty was prescribed Prednisone which he responded to quickly. Unfortunately, he relapsed often for the next 5 years. Ty is steroid dependent. The first 2 years after the diagnosis were horrible! We felt like we lost our little boy to this horrible “miracle drug”. Slowly we all adjusted to our new “normal”. 

Ty is 9 now and is in the 3rd grade. He misses a lot of school due to his doctor appointments but manages to keep an A/B average. Sadly, his school is not satisfied. Ty is being punished for being sick. Despite all of his absences being excused for medical reasons, Ty is not allowed to participate in a district-wide program for children with good grades and attendance. Essentially, he is being punished for being sick with a disease for which there is no cure. The school and school district do not understand the pain and isolation Ty is feeling.

We have started a Petition with Change.org to bring awareness to the way the school district is handling this situation.


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Ty and his family are fighting Nephrotic Syndrome. Please consider making a donation in honor of Ty.

 

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