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Parent to Parent: Connecting to Resources for Kids’ Health Issues and Diagnoses

By Sehreen Noor Ali (@SehreenNoorAli on IG) 

In 2018, my daughter was diagnosed with a serious health issue. Well, technically she wasn’t diagnosed — we just received back an abnormal test. Her diagnosis has been a 3+ year journey/mystery.

The lack of information, the searching on Facebook groups, the stress. It all got to be so much. I left my job to get answers. To set up her 17+ therapies a week for her tiny, beautiful body. To try to get myself together after losing my dad to cancer just months before. 

On most days, I’d get one kid out the door for school. Then I’d rush to get the other one ready for her first physical therapy appointment. Fortunately, early intervention comes to your home (pre-COVID) so I could make a quick cup of coffee while I got her set up. I’d then head to ‘work’, i.e. a cafe where I had enough space to call doctors, fight with insurance, and advocate for more services.

After a year, things were stable. I interviewed for a couple jobs, both of which would’ve excited me years earlier. But I couldn’t do it. Everytime I tried to envision myself in the roles, I’d almost pass out with anxiety.

I realized something: I couldn’t be the mother I needed to be and the kind of employee someone wanted me to.

I had been through so much trauma – the idea of asking permission to take my daughter to doctors appointments was not something I could handle. Undignified is the word that kept coming to mind. The corporate world wasn’t a place for a mom like me.

So, as the Universe sometimes orchestrates, another opportunity presented itself.  A very long story short, I started Sleuth with an amazing co-founder. Sleuth is a children’s health information platform. 

I consider myself amongst a league of mothers who started something meaningful from their deep pain. I not only want answers for my daughter, but I believe fervently that we are all underserved when it comes to good, high quality information about health.

In the “before times” (i.e. before my daughter’s health issue), I had worked in education technology. I spent my days figuring out how to build education products that would delight parents and educate their children. 

Sleuth uses thoughtful technology to collect and share parents’ stories about child health with each other. A parent anonymously shares symptoms and what they’ve done to get answers. We use secure and safe data science technology to pull out data and insights from these stories. We make them available to parents of similar children. 

We believe each parent is an expert in their child’s health. That expertise can be life-saving for another parent. Another mom’s advice is how we got closer to answers for my daughter. We want parents to get high-quality, data-driven guidance when they need it, not four years later (which is often how delayed a diagnosis can be).  

This is my humble request: will you share your story on Sleuth? Start by pressing the ‘Join Now’ button at www.hellosleuth.com and choosing Create Full Profile.

As a token of appreciation, we will send a $10 Amazon gift card to everyone who answers Questions 1-3 of Your Child’s Story Section — just DM me on @hellosleuth on Instagram with your email address and I’ll send it right over. Everything you share is anonymous and secure. We know it’ll help another family who is in your shoes.

Sehreen Noor Ali is the Co-Founder/Co-CEO of Sleuth, which helps parents better steer their child’s health with directions from families and experts on a similar route. She started her career as a public servant/diplomat with the State Department and later worked at several edtech companies. She is the founder of EdTechWomxn, on the Advisory Board for SXSWedu, and is known as “kinda silly, but most mostly old” by her seven year old. Connect with her @sehreennoorali and @hellosleuth.

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