You may remember my post from this time last year February 28 is World Rare Disease Day….our almost 3 year old grandson Liam has multiple rare medical conditions resulting from a craniopharyngioma brain tumor at the age of 16 months and underwent a 12 hour brain surgery to remove it. As a result he has Adrenal Insufficiency, Diabetes Insipidus and has panhypopituitarianism (no pituitary gland). He also must take thyroid meds and growth hormones. His body systems that were governed by the pituitary gland must now be regulated with multiple medications every day for the rest of his life.
We ask that you keep us in your thoughts and prayers tomorrow and throughout the coming year as we celebrate World Rare Disease Day.
Here is a message from Liam’s mother Jessica, whose birthday is also on February 28: “With tomorrow being world rare disease day I am reminded it’s going to be my birthday. But it’s not all about me anymore… Now I share my birthday with a day of being thankful for all the obstacles my son has and will continue to overcome for the rest of his life. He is the strongest, happiest, funniest and sometimes the most serious little guy I know. He doesn’t let anything hold him back. I’m lucky to call him mine.”
Thank you all for letting our family share this with you.