2014 New Years Message for Families

envelopeThank you to all the families of individuals with MECP2 Duplication Syndrome that have made the effort to communicate with and support other families.

Thank you to all the families of individuals with MECP2 Duplication Syndrome that have worked so diligently to spread public and professional awareness of the syndrome.

Thank you to all the families who have worked so hard to raise money to support research that could lead to a treatment that would substantially improve the health and development of all our children.

My biggest thank you goes to families of individuals with MECP2 Duplication Syndrome who have done everything they can to make their loved ones as safe, comfortable, and happy as they can possibly be. I hope and pray that all our loved ones will live to benefit from an as yet undiscovered treatment. I wish I could promise my son that he would… I wish all of us could promise our loved ones that they would. But right now, no one knows for sure if and when that discovey will come. Of course, that doesn’t mean we can’t work to make it happen, and of course we should.

Until that day does come, all we can promise our loved ones are good care, love, and simple pleasures. These things won’t cure the many challenges they face, but these things can make life a lot better. Nothing is more important than that.

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