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How Facebook is Helping Save My Son's Life After His Rare Diagnosis

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Dear Facebook,

Thank you for keeping my child alive.

I started a non-profit called Smash SMARD to save my child’s life and the life of the other children affected by this horrible genetic disease. It is because of you and your platform, that the outcome of my child’s ultra rare disease (only 60 living in the world) will be forever changed, and I don’t know how to repay you.

While so many people feel that social media is a completely inadequate means of sharing personal stories, and a big facade in the depiction of reality… for us it has and will continue to be the reason that my child has a shot at at life and the reason the outcome of his disease has already changed.

Why, you ask?

On October 4, 2017 my (then) 11-month-old child was diagnosed with spinal muscular atrophy with respiratory distress (SMARD1), which affects the IGHMBP2 gene on chromosome 11q13, and the first thing I did was log onto Facebook to seek out support.

We were confused and thought he had the much more common version of SMA (which affects the SMN gene on chromosome 5) but quickly found out that he did not, and that there were no options for treatment for his disease — and there still aren’t.

Instantly, I was connected with 40 to 60 other families across the globe who were going through the same thing as me but had more time under their belt. Our teeny, tiny group provided me with so much more knowledge and insight than any other physician, website, research paper would have ever been capable of providing.

In our diagnosis meeting, I was told that my child would die before he turned 2. He is now 2.5, thriving and is doing better than he should be… all because of what I have learned from other families on Facebook. We were able to gather information and make even better and more informed decisions about medical interventions for my son based on other experiences that we never would have found in literature.

Since the disease is so incredibly rare, many of our families are overseas and speak other languages. You have allowed us to effectively, easily and immediately translate messages between each other. This has allowed us to learn even more about each of our children, and communicate how we can support each other. Had I not found this group, and utilized this feature I would have never been able to effectively communicate without a translator.

My son was in the hospital for a year, and while we were there most of my time was spent constantly sharing our story so we can raise awareness for a disease that most physicians, hospitals and specialists have never even heard of. Because of this, we decided to start reaching out to families with other diseases by sharing our story to a mass community who were able to point me in the right direction. And because of this, I was eager to start a nonprofit.

Once we started our nonprofit, SmashSMARD, your site has played an essential role in our mission. Because of the connections we have made on Facebook prior to our nonprofit, we were able to find reputable researchers who were interested in helping us develop a life-saving gene therapy for our son. These researchers have brought gene therapy to more than 100 pediatric neuromuscular patients with a similar disease that has proven to be effective for my son’s disease as well. The research is ongoing and we are hoping that if we can continue to keep the research funded, 10 to12 children will be able to participate in a clinical trial in the year 2020.

It is because of you, Facebook, that we will be able to continue to fundraise and keep the researcher funded. Since starting our Facebook fundraising, this amazing feature has allowed us to raise more than $500,00 in five short months. This is because not only do you not charge fees, but you allow other countries to participate in fundraising with no penalty to us or them. We have been able to stay connected to our supporters and even send tax receipts on our behalf. We have been able to create events and invite large masses of people, allowing them to also share the event with their friends, making the turnout even greater.

What you might not know or understand is these things are such a big deal when your child’s life is relying on every single penny. Not only that, you have streamlined a process for people to want to help and take away responsibilities from my family that I genuinely don’t have time for. The care that my son requires can be daunting, and so while I have to make the time to spread the word, fundraise and do all of the things we are doing — you have allowed our families to focus on just that, and that is invaluable.

Your platform has allowed people to connect with our organization in a time of crisis, when they felt they had nowhere to turn. Even more, we have been able to quickly and easily jump on a video chat with people across the globe when we weren’t able to find another platform that would support a video call.

We were able to save a SMARD child’s life because of Facebook. There was a hospital who was trying to force an extubation on a child in another country (which would have been fatal) because it would have been too expensive to keep the child alive. Facebook allowed us to speak with the family and clinicians on demand to share where we are at in the process of research and why it is so important to give this child a chance. I am happy to say that this child is alive and thriving.

I wanted to write this public thank you note, so you know that it is because of your site that our child is still alive, and will stay alive. Your site is the reason so many other children will have a fighting chance. I don’t think that there is a way to repay you, but gratitude is due.

We also thank the 6,584 people who have donated on Facebook who have allowed us to overcome this overwhelming obstacle of fundraising. While it is a good problem to have, we are completely overwhelmed by others’ generosity and wish we could individually thank each and every person. We still have $1,000,000 to go, and we know that we can do it quickly because of the power of Facebook. Time is of the essence.

Thank you for changing the outcome of my child’s rare disease and for keeping my child alive.

With so much hope,

Brittany Stineman, A rare mama

Originally published: August 14, 2019
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