I am rare MOM because my parents were told their chances of having kids are 1 in a million yet here I am, and 31 years later I have a wonderful 5 year old with a rare disease called NDI.
He is an amazing little warrior and has the most amazing do not give up attitude. He is a fighter. It took is 2 years of multiple tests and doctors visits, we saw GP's, Peads, dieticians, ENT's, urologists, endocrinologists, and hospital stays until eventually getting a diagnoses.
I often felt like I was losing my mind and maybe I was over reacting as that is how I was made to feel but in the end we never gave up and got an answer.
Once he started treatment he began putting weight on and doing well again. It is amazing the difference we see in him from how he was before and how he has progressed till now. He truly is our rare warrior and we can't wait to see what else he will learn and teach us in the years to come.
Jasper is a wonderful 5 year old that has had a hard life already but has an amazing attitude showing us that nothing defines you