Little Ferry, NJ
Leart is 7 years old and loves his PS4 and iPad (shocking!). He is in first grade and is the most caring thoughtful little boy I have ever met. His favorite color changes day to day from blue to green. Everyone that meets him falls in love with him instantly they say he’s like an old soul. He was diagnosed with SIOD when he was 2 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 has had many ICU admissions, he suffers from seizures he’s also had in the past many TIAs, were they would leave him paralyzed for a week I would have to regain all his movements again. He still at times suffers from high blood pressure.
Leart’s treatment plan has consisted of dialysis every night for 12 hours. Twelve different medications four times a day. This spring he is scheduled to have a bone marrow biopsy.
Many challenges come with SIOD. I am a very stressed mom being the primary caregiver. I have to wear many hats in my daily life. Leart has two younger brothers has two younger brothers. I Just gave birth April and my baby was only two weeks old when Leart has to go in the ICU. Leart gets very tired quickly no the whole family has a bedtime he needs to be on dialysis by 7:30 we could no longer stay at friends and families longer than 6:30. Bathtime is no longer the same because after bathtime I have to change and clean his exit site PD catheter.