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Rare Disease Adoption with Josh and Monica Poynter

Once Upon A Gene

Rare Disease Adoption with Josh and Monica Poynter

May 6, 2021

Rare Disease Adoption with Josh and Monica Poynter

ONCE UPON A GENE – EPISODE 081

Rare Disease Adoption with Josh and Monica Poynter

Josh and Monica Poynter have a son named Tag with severe Hemophilia Type A, a rare genetic disease which makes him vulnerable to prolonged bleeding. Despite this, these rare parents knew they wanted to grow their family. They were unable to have another biological child and welcomed their adopted son Trey into their family. Trey shares the same genetic disease as Tag. He was abandoned at 2 years old and spent 7 years living in an orphanage in China. Trey is now in his forever home with his forever family and Josh and Monica share their heartwarming family and adoption journey story with us. 

EPISODE HIGHLIGHTS

What type of Hemophilia do Tag and Trey have and how are they affected by it?

They both have Hemophilia Type A and are missing the factor VIII clotting protein. If they’re not receiving medication to prevent bleeding, they bleed easily and bleed longer. Without a preventative regiment, bleeding can be life threatening. 

What empowered you to adopt another child with the same rare disease?

Once Tag started a preventative regiment and wasn’t bleeding, it became routine and we became more comfortable. At this point, I think it would be more difficult to have a child without Hemophilia. 

What obstacles did you face with adoption?

We knew our family wasn’t done growing. When we started the adoption process, we found Trey, read his story and saw a video of him trying to walk with an active bleed in his knee. He had the biggest smile on his face and we were all-in. There was a sense of urgency that we had to hurry. Our family was behind us to support us and help us fund raise, watching Tag while we traveled and interviewed. 

What would you tell other families considering adoption of a rare disease child?

You can give a child with a rare disease a completely different life and a different perspective on how to live their life. It is life changing for the child, but even more so for you as a parent. It’s a challenge, it’s work, it’s stressful– but it’s worth it in the reward of blessings you experience. We started with no knowledge. If it’s something you’re considering, take the first step in faith. Help is available and you’ll get through it, but you have to take the first step.

LINKS & RESOURCES MENTIONED

Hand in Hand International Adoptions

https://www.hihiadopt.org/

Kentucky Hemophilia Foundation

https://www.kyhemo.org/

EPISODE 078 – Media with a Mission with Believe Limited CEO Patrick James Lynch

https://effieparks.com/podcast/episode-078-media-with-a-mission-with-believe-limited-ceo-patrick-james-lynch

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/

Twitter

https://twitter.com/OnceUponAGene

Instagram

https://www.instagram.com/onceuponagene.podcast/?hl=en

Built Ford Tough Facebook Group

https://www.facebook.com/groups/1877643259173346/

 

 

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