A [potential] cure for Sanfilippo is here!

Dear friends and family-

 

It is with great joy and anticipation I write this! God has heard your prayers. 

 

There is a cure for Sanfilippo! Yes, you heard right! It is a miracle!  The very thing you have been praying for on our behalf is a reality. 

 

What we don’t know, is if our children will receive it in time.  The door is probably closed for Jayden. His brain is too damaged for him to benefit from gene therapy, from what we understand, but we will continue to pray that isn’t the case. Brooklyn will either miss the benefits of gene therapy by days or months, or be one of the first patients to receive it, like Eliza [Eliza Video].  The only thing standing in the way of Brooklyn and this drug now is money.

 

What would you do if it was your child? Your loved one?

 

We trust only in our Lord and Savior, Jesus Christ.  We believe that the timing is all in His hands. To be honest, we take great comfort in this which is why we never fought for a cure.  But now with a cure available, we believe we need to fight.

As I type, I am sitting next to Brooklyn in an emergency room bed at Lurie Children’s, waiting.  She has been sick for weeks and we don’t know what is going on. Lab results are looking like mono. Today, we will most likely go home. As she sleeps though, she wakes with nightmares, crying out and screaming. This isn’t from mono, this is Sanfilippo shorting out her brain.  Her terrors are a vivid reminder that we don’t know how much longer we have before she starts regressing.  

I hate to be dramatic, or try to get a sympathy vote, but this is just our life. I know you all have pain and all have causes that occupy your passions, time, and heart. We are so grateful for all the support we had from Build with the Boyces and are a bit gun-shy to ask again for support. This is our mountain, and I know many of you are climbing your own. But we know we can’t, and don’t want to, climb it alone, so we are reaching out for hands.


I know Saturday, April 26 is right around the corner, but we were wondering if you were available to come pray with us? We are open to fundraising suggestions as well and will outline some opportunities.  Maybe you all could come by 10-11AM and we could pray and talk about next steps. Please private message me if you can attend.

Until then, will you share Eliza’s video and ask your friends do the same? The O’Neill’s started a non-profit and all the money they raise goes directly to fund clinical trials for gene therapy at Nationwide Hospital in Ohio. Any money donated there will benefit us as well.  The video {the link is posted at the top} is going viral and is only 3 minutes so it’s our best tool to spread the word right now. Donate Here

If you want to donate closer to home, our dear friends, the Huberts, are also fundraising for clinical trials. Donate at LivLife

 

Thank you for your love and support.

Trusting God-

Stefanie and Justin 

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