Kaden’s Memorial and the HHV-6 Foundation

Kaden’s memorial is tomorrow.

So many of you have asked if there is anything you can do. Not for us, truly we have been blessed with food this past month and money to pay for all the expenses from Dallas and having to move. And that’s just the tip of the love iceberg.

Like a love boat just – with ice.

What? Anyway.

There is something we would love to share with you all. We have been working with the CDC for Kaden’s case, and in that process have been introduced to Kristin Loomis, who is the Excecutive Director and founder of the HHV-6 foundation, started in 2004.

“The HHV-6 Foundation is a non-profit institution that encourages scientific exchange between investigators by holding conferences for virologists and clinical researchers, maintaining a repository of reagents to facilitate research, and offering pilot grants for promising research projects.

The Foundation also seeks to raise awareness among physicians of the many conditions that have recently been associated with HHV-6 infection and encourage the discovery of antiviral compounds appropriate for HHV-6. The Foundation pilot grants allow investigators the seed funds to gather preliminary data in order to apply for larger grants.” 

I talked with her extensively about my pregnancies and Kaden the other day, and they are working in conjunction with the CDC to find out why this is happening – and if there is a way to stop it. It’s all very complicated, but Kaden is a huge part of their research. They will be sending for samples from us and his medical records. They think that the reason I lost the twins might very well be tied in with HHV-6. If that is the case, we have to make some serious choices about our future family.

Knowing how this is going to be a long and expensive process for them, we donated the money raised from the Backyard Buffalo sale, and continue to donate funds, to the HHV-6 Foundation.

If you would like to do something in Kaden’s name, please consider sending a donation to them. You can specify it be used for his case or general research. It’s all tax deductible. Nothing on earth would give us greater comfort than knowing we might be able to find a cause for this.

Thank you all.

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Where I’ve written lately:

Comments

  1. You are going before many people. Your sacrifice will be a blessing to others. Praying God's strength to cover you.

  2. I have been following your blog for a long time (or what feels like a long time to me) as a relatively new blog reader. When Kaden passed away, I couldn’t imagine what you were going through but I also could not donate anything due to our “family finance rules.” We WILL donate to the HHV-6 foundation in Kaden’s name. I hope you find some peace today during Kaden’s memorial service.

  3. I adore you, praying for you sweet friend

  4. I am praying for you my friend. You are so loved.

  5. I just woke up and wanted to come on here to tell you and your beautiful family that I am thinking of you today. Sending lots of love your way.

  6. Chelsea Johnson says:

    Just wanted to tell you that I am thinking and keeping you and your sweet family in my prayers today.
    Your story really inspired me, I stumbled upon your blog a few months ago. You know the strange blog world how you start somewhere and end up on a totally different site, sort of like YouTube. I am currently in nursing school to become an RN. I had always loved babies and kids and I knew I wanted to work with them. When I found your blog I started as far back as I could and read each blog entry. I felt like I had cried with you, shared good times with you and also experienced extreme heartache with you. Your story touched my life and has help me decide to specialize in neonatal care. The care you received with the twins, really hurt me and angered me that someone would treat you like that. I want to help positively impact people and their healthcare experience. I want my patients and their families to only comment on the outstanding care they received and not have so many negative experiences. I just wanted to say thank you for sharing you story. I takes someone incredibly brave to share every moment of their life good and bad. Thank you.
    Your family here and your sweet boys in heaven have impacted my life more than you will ever know.

  7. Your stories have touched me deeply. I have a heart child who was affected by a normally benign virus. I applaud you for your hunt for answers. I hope you get to the bottom of it – knowledge is power! Stay strong mama!

  8. Makes me think of “and a little child shall lead them”.

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  1. […] and Kaden – born this past August full term and found to have a rare heart condition and virus which he passed away from 3 weeks later. We are in the process of rebuilding our lives without […]

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