Lydia was born with a very rare genetic metabolic disorder called tyrosinemia. Her body does not properly process proteins, so she has to eat a very low protein diet and take daily medication. The requires her to spend a lot of time in the hospital for various appointments, where she is also monitored on an ongoing basis by special doctors and a dietician. Because tyrosinemia is a liver disorder, she is also required to have scans of her abdomen and an annual echocardiogram, which is an ultrasound of the heart. She also has to see a pediatric ophthalmologist because her medication can cause problems with her vision, and she sees a pediatric neuropsychologist to ensure she is meeting developmental milestones.

In addition to this genetic disorder, she was diagnosed with Langerhans Cell Histiocytosis (LCH) right after her 4th birthday in March 2017. LCH is a rare cancer and autoimmune disorder. Lydia completed her first year of chemotherapy treatments for LCH in February 2018, but she relapsed and developed a new lesion in her skull in March 2018. Lydia has surpassed the odds and is an inspiration to those who fight with her. She is currently undergoing her second year of chemotherapy. Life with Lydia involves endless appointments, but she doesn’t let anything bring her down. She is a fighter and usually has a smile on her face!

Lydia received a beautiful Cinderella cake from the talented Sugar Angel Jamie Duray to celebrate her 6th birthday. She is a special girl. She is strong and she is courageous, she truly is a princess.

With Smiles,

Olivia Graupmann

Icing Smiles Blog Writer