By Selena, Wolman disease, United States, March 3, 2019
Our granddaughter Tyliah was diagnosed with Wolman Disease when she was 3 months old. We spent a lot of time at Vanderbilt Children’s Hospital. She started getting infusions of a drug called Kanuma. We prayed this medicine would work for her and that maybe a cure would be found. She did okay for about a year and a half then she got an infection in her port and then another in her PICC line. Her body was tired and her health started to decline. She could no longer stand, walk or any of the things she was once able to do. Her muscles mass started to waste away, the diarrhoea and vomiting got worse. They told us in April of 2018 there was nothing else they could do to help her so we came home and made the most of every moment we had with her. She was always a happy, smiling girl. Even in the 2 1/2 years we were blessed to have her with us she rarely showed she was hurting. She succumbed to Wolman Disease on June 21st 2018. We also had a grandson who had the disease when he was born in October 2016 and he passed away on February 12th 2019. I pray that no one else ever has to go through this and I pray more money and time goes into research for this disease and a cure is found.