It’s That Time Again – February 28 is World Rare Disease Day

Rare Disease Day 2015

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.


About fiberninja

fiber artist, writer, nun
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4 Responses to It’s That Time Again – February 28 is World Rare Disease Day

  1. Mary Kendall says:

    Your story about Liam is deeply moving. I wasn’t aware that today was anything other than a simple Saturday, but of course each day has meanings to others we often don’t know. Clearly Liam has his challenges–it won’t be easy–but he has the love and support of your loving and caring family. He is blessed by that just as you have a rare gift in him. I’m sending birthday wishes to Jessica, and I’m sending prayers and loving kindness to Liam. May you all be happy, healthy, peaceful and safe. I love Liam’s beautiful smile.

  2. Pia says:

    My best wishes to your cute little guy!

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