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Leart Dervishaj

Little Ferry, NJ

My Story

Leart is was almost eight years old when he passed from obstacles with kidney disease, a side effect of SIOD.

He loved his PS4 and iPad (shocking!). He was in the second grade and was the most caring thoughtful little boy. His favorite color changed day to day from blue and green. Everyone that meet him fell in love with him instantly they say he was like an old soul. He was diagnosed with SIOD when he was about 3 years old. We felt relieved when he was diagnosed because for two years we had been searching for answers. We finally had a diagnosis! 

 

Leart’s SIOD didn’t affect him in the beginning as much, we did IVIG infusions every four weeks he took antibiotics and blood pressure medication. Then 2018 came around, and he got very sick. He had spent two months in the hospital and needed four surgeries. One of them being a double nephrectomy so he currently has no kidneys. He started on hemodialysis until his PD catheter healed now we do at home dialysis for 12 hours every night. May 2018 through January 2019 Leart had many ICU admissions, he suffered from seizures he also had many TIAs and they would leave him paralyzed for a week I would have to regain all his movements again. He at times suffers from high blood pressure. Leart’s treatment plan consisted of dialysis every night for 12 hours. Twelve different medications four times a day.