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Technically Invisible

#RareDiseaseDay

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Did you know Leap Day is also Rare Disease Day? This year’s theme is Patient Voice, which I love. Rare Disease Day is certainly not only about the diseases themselves – it is really about the patients.  Rare diseases lack funding, research and public awareness. The families affected by rare diseases often search for answers long before finding them. They become experts and champions as they fight symptoms, diagnoses and ignorance. I have witnessed rare diseases find special people and have seen their strength and love carry them through trials no human should experience.

Though I hope all rare diseases and patients experience increased awareness, today I share the stories of Rebecca and Michael.  Becky and Michael are fighting elusive enemies, all the while showing courage, hope and gratitude.  Lafora Disease and Mitochondrial Disease have turned their lives upside down, but disease will never define how they and their families love, live and connect with each other. The strength of Becky and Michael’s families reaches far beyond a necessary reality – it personifies the power of love in ways I never knew existed.

I think of them every day.  But, to be honest, holding these families in my thoughts isn’t enough to make a difference. So, today – take a moment to learn about and raise awareness for a rare disease. If you are able, give of your time or your resources to help families who need it.

Please take a minute to watch Michael’s latest video, where he shares his thoughts for others on Rare Disease Day:
https://www.facebook.com/michael.goldberg1212/posts/10156507128025627

You can like Becky & Michael’s pages on Facebook:
Becky’s Dream:
https://www.facebook.com/Beckys-Dream-Cure-for-Lafora-Disease-142258165813053/?fref=ts

Hugs for Mito:
https://www.facebook.com/HugsForMito/?fref=ts

You can visit, share and contribute at their websites:

Becky: www.beckysdream.org

Michael: http://www.hugsformito.com/

Helpless and Helpful aren’t as far apart from each other as you think they are.

UPDATE: On March 1, 2016, Becky lost her courageous battle with an unforgiving disease. Her family showed unwavering support and strength every step of the way during these last six years. It has been their refusal to let Lafora define everything that allowed Becky to maintain such bravery, happiness and hope while defying many of the definitions of the disease. Those of us fortunate enough to know Becky and her family have witnessed the undeniable power of unconditional love. Please visit Becky’s memorial page where her services were held, at the Bourne-Nickerson Funeral Home. Leave a word of encouragement for Becky’s family.  The tributes there reflect a life worth living, and a young lady who chose to be happy every step of the way.   Our deepest love and condolences today and always… You are all #BeckyStrong.

Speak Life,

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