The story of Talon
My name is Talon, I’m 10 years old and was diagnosed with LAL-D in March of 2024. Around 7 years old my growth stopped and at my 9 year old check up we did a routine cholesterol check that came back at 375. My mom took me to John’s Hopkins about an hour from where we live to see cardiology where they confirmed my heart was great but my liver and spleen were extremely enlarged. We saw a lot of specialists and did a lot of blood work and it came back that I am a rare kid. There is no cure for my illness and I have to get Kanuma liver enzyme IV treatments every other week for the rest of my life so my liver does not fail. This past June we had a biopsy which showed my liver is in cirrhosis. I get my infusions still and this next couple months will tell if they work and keep me liver from worsening or if I will need a transplant. My mom is a nursing student and I have two younger siblings so we’re super busy but my family is with my 100% so I’m lucky to have a great team at home and at the hospital. I have to do virtual school every other week because my infusions make me sick and I can’t do any physical activity since my spleen is swollen but I still play drums, draw and hang out with my friends like a normal kid. Hopefully other kids like me can live a normal life too.