Can you see it? This is the face of a rare disease. She is smart, funny, goofy, and has a mighty powerful sweet tooth.
We spend most of our time working hard for Alex to lead the normal life of a 13 year old girl. She is also learning to deal with the reality of living every day with a rare disease.
She is learning that the medical professionals she relies on often need us to explain the best treatment plan. She is learning that no one else will understand what it feels like to walk a day I her body. She is learning what her limitations are and what her opportunities will be.
We spend most of our time working hard for Alex to lead the normal life of a 13 year old girl. She is also learning to deal with the reality of living every day with a rare disease.
She is learning that the medical professionals she relies on often need us to explain the best treatment plan. She is learning that no one else will understand what it feels like to walk a day I her body. She is learning what her limitations are and what her opportunities will be.
Alex's LCHADadventure is a unique path that our family has been on for 13 years. We are blessed beyond measure to learn a little more each day about the rare disease LCHAD.
So today we celebrate Rare Disease Awareness with a sweet treat and our own personal rare disease hero. Today's LCHADadventure is a little sweeter because of my girl and her smile.
So today we celebrate Rare Disease Awareness with a sweet treat and our own personal rare disease hero. Today's LCHADadventure is a little sweeter because of my girl and her smile.
