THE BLOG

An Open Letter to Baby Leo's Dad From a Down Syndrome Mother

02/17/2015 01:17 pm ET | Updated Apr 19, 2015
George Doyle via Getty Images

Dear Sam,

Is it okay if I call you Sam? I hope so. I took the initiative to do so because we are now both members of one of the most closely-knit communities in the world, that of being a parent of a child with Down syndrome.

We face a lot together, us parents of children with Down syndrome. We strive to make the world more accepting of and inclusive toward our kids and the tribe they belong to. Towards this end, we share resources, we empathize with one another, we nurture each other and we guide.

When you left Armenia with your newborn son Leo, headed for the more supportive and disability-welcome pastures of your native New Zealand, you sought to raise $60,000. You wanted to be able to stay at home with him part-time. With your story going viral, you have since raised approximately $440,000 above your goal.

You have stated that on your GoFundMe page that "this is also for the people of Armenia." I want to take you for your word. I know how much even part of those donations would mean to organizations that are struggling to provide even basic rights and access for individuals with Down syndrome.

You are not likely to be aware of the enormous efforts that have been expounded by Stephanie Meredith, also a parent of a child with Down syndrome, in her outstanding work with Downside Up , which seeks to work collaboratively with Russian individuals and empower families there. Downside Up would be an excellent organization for you to reach out to in your quest to help other Armenian children with disabilities.

You are also not likely to know about Down syndrome Education International. This invaluable organization has worked hard to affect widespread and foundation-level change with Down syndrome in that area of the world

These organizations, as well as Down syndrome International and the links on that site to reputable organizations that serve people with Down syndrome world-wide will surely help you in your goal to assist Armenians and children with Down syndrome and other disabilities.

The one thing that I beg you not to do is to donate to Armenian orphanages. Doing so will help to perpetuate the very institutionalism that we seek to change.

Sam, I am hopeful that you are going to be true to your word. With so much money at stake, I can't help but be skeptical:

  1. How much of the $500,000 that you have received will actually be directed to improving services for Armenian children with disabilities?
  2. What programs and organizations do you plan to donate to?
  3. How much longer are you going to keep your GoFundMe account open? At what point will you say that it's enough?

Now, I realize that this money has been donated to you and it's your choice to honor your own word. But I urge you to keep a firm eye on the conditions within Armenia and Eastern Europe for children with disabilities, the very conditions that caused you to leave.

Sincerely,

Meriah Nichols