Monday, February 29, 2016

Rare Disease Day 2016 - Making the voice of Rare disease heard


Today is the worldwide Rare Disease Day; this year’s theme is the patient voice. The goal is to encourage and empower patients to get their voice heard. The little patient’s voice that is nearest and dearest to my heart is that of my sweet Mason. Every day I get to hear him tell stories, jokes, say his prayers and tell me that he loves me. I haven’t heard Mason speak much about his rare disease. He is well aware that he has NEHI and he also knows he doesn’t really like all the test and procedures he has done and continues to do. The one big question we have received hasn’t been from him but from his older brother. Jackson once asked us “Why did God give Mason lung disease? That wasn’t a very kind thing for him to do.” This raw and honest question came from a brotherly love and it kicked me right in the stomach. After getting my breath back I explained to them both that “God loves us all so much and we are all perfect in his eyes, however just like some people wear glasses because their eyes don’t work perfectly, Mason has to use oxygen because his lungs aren’t perfect. I get that this seems unfair but God knows Mason’s strength, he knows he is a fighter, a lover, a calm and sweet child; God knows he can handle this. God also made sure Mason had an amazing older brother who would love and care for his sweet younger brother. He also gave Daddy and I the sweet blessing of these two boys because he knew we could handle it!” They both seemed satisfied with this answer. This year’s theme has me thinking back to this question and realizing that the older Mason gets the more questions he will have. Right now it’s my job to ask the questions and fight for answers. Right now I am the patient voice but what happens when he speaks for himself? I can handle the “we don’t know” that comes along with almost every question I have because it just gives me more drive to do something. I want Mason’s voice to be confident and informed; I can’t stand the thought of it being weak and unsure because there are no answers. Today I am thankful for Mason and the great year that he has had health wise. Today I also felt like I got another kick to the gut because the next question I get asked by my boys I may not have an answer to. We have no idea what Mason’s future will look like health wise; we can’t even predict what next month will look like. NEHI may be rare and unpredictable but that doesn’t discourage me. We need answers before more questions are asked and we need Mason’s voice to heard. For now I’ll speak and I’ll speak loud; I love Mason with all my heart and I will defeat NEHI. Jonathan and I will continue to make our voice heard and very soon we hope to have a plan that all our friends and family can join and with the loudness of a crowd we will make a change in Mason’s future and all the lives of the precious NEHI kiddos around the world!



Since the theme is "Making the voice of rare disease heard" here is a video I made last year. I don't exactly like the sound of my own voice but when it's talking about something this important I have to share!

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