life update | in the midst of tragedy

[@LETHALCHEVY]

Thank you cousin for being so open to talk about something so difficult and helping to make others aware of this. I pray for the family always

[@TheExtraFam]

Thank you 🤍 It is hard to share, especially in this way, but I know there is a great purpose in sharing her story 💜

[@paolairaismorales9569]

This is strength in real life. Thank u for sharing. My heart is with you and I will continue to pray for your entire family.

[@TheExtraFam]

thank you for saying this 💜 I want to share her story, even though it’s hard.

[@josegarraza8003]

I’m so sorry for your loss. I follow your videos as they are really inspiring for my family. I have a daughter with down syndrome that recently spent 1 month at the hospital, the diagnosis wasn't clair but the doctors suspected of HLH. We made all the genetic tests at the hospital and waited for the results during 2 weeks (we live in Switzerland but as it is a rare disease the test are made in Germany). I read a lot of information about it and as you can imagine we were really afraid. Finally it wasn't that and my daughter is doing well now. It is a very dangerous disease that needs more research, and people awareness is very important. From the bottom of my heart, I send you all the love. Thank you for sharing your feelings, our prayers are with you and your family.

[@TheExtraFam]

Oh wow! I’m so fascinated that we have these 2 rare connections, and yet I am so thankful that your daughter does not have HLH! The more we learn about it the more scary we realize it is. We hope we can help raise awareness and more will be done in the future to prevent babies dying. It’s truly been the most unimaginable loss. Thank you for reaching out 💜

[@teck-deckx2665]

Sending love and prayers your way!!💜🙏🌼

[@TheExtraFam]

Thank you so much 🤍💜🤍

[@ErinMaryMartin]

Thank you for sharing 🙏🏻💛

[@kellycreates3310]

Nevermind my question. I’m so sorry for your loss.

[@TheExtraFam]

That’s ok. I think it’s very common to assume SIDS at her age. HLH is very rare, and most people have never heard of it. We hadn’t heard of it until this happened.

[@TheAlexandriaRae]

What happened to you guys?