Thread by @Simons_Law

🧵 🪡 time again: Look at this sweet girl!!!

Read more for mom’s story of what’s been a truly miraculous life:

Hello Everyone-

I wrote this to the geneticist who gave our family no hope, in 2019, for our child Sajjona.

I find it important to share the response w/the world. Name is not disclosed…pictures for cuteness

To all trisomy families or families

who were told their child was incompatible with life or a vegetable- this is what our advocating accomplishes—

#change!!!!

Please read the response to my letter from unnamed doctor & you’ll see why we need to keep writing letters when our children were labeled & given no hope.

Dear Ms. Murphy,

First of all, I would like to say how very sorry I am for my role in the distress you have gone through. Let me also thank you for your willingness & honesty to write to me of this & for letting me know how Sajjona is doing. She is beautiful & really looks &

sounds to be a wonderful little girl.
I have read your descriptive & thoughtful letter many times now & thought a lot on how I can best learn from what you tell me. Clearly, I did not communicate well. Though it may not have seemed to be the case, it is something that I do worry

& think about a lot. I try to be mindful that how I, as a doctor, talk to people has consequences. My goal is to be as supportive as possible rather than to add to the trauma. It is much to my regret that this was not the case.

I will admit that I am a bit perplexed regarding

how I spoke with you. It is not my nature to be certain & I could not agree more with you that I am no more able to look into the future than anyone else. Indeed I have been trying, for many years, to publish a case of another girl with trisomy 18 who is doing significantly

better than the literature reports, in order to let people know that there is a spectrum. I am also especially concerned by the message you perceived from us that she would be "nothing but a vegetable". I view no child in this manner, no matter how incapacitated they are - they

are human beings & I feel much angst at the pain and distress that disorders can bring to some - it is inconceivable to me to ever reference a child in such a manner - the fact is that I truly admire the children (& their families) that I meet & who are not just coping, but

prevailing despite adversity. It is a part of your letter that particularly touched me & which I need to reflect more on in order to avoid such a thought ever occurring in the future.

In regards to your request, as a part of changing the dialogue, if you provide me permission,

I would like to tell of Sajjona's capabilities (de-identified of course) in future situations as a real life example of potential. I recognize that it does not take away the hurt that I inadvertently have caused you & your family but hope that I can in some way lesson that. In

relation to this, I would welcome the opportunity to meet with you, listen & talk more &, maybe even have a chance to say hello to Sajjona.

Again, my deepest apologies
Yours very sincerely
#SimonsLaw