Caraline's Anchor of Hope

Please see Blake and Lindsay's story below regarding their 5-year-old daughter, Caraline. Their world has recently been turned upside down with a diagnosis on their beautiful daughter. They can use support from their family, friends, and community as they navigate through this. Right now, please consider donating to their cause so that Caraline can get the best medical treatment.

On February 1st, 2024, we joined a club. It’s a club that we had never heard of and that no parent should have to join, but we did. Our sweet Caraline was diagnosed with a rare genetic disorder called Sanfilippo Syndrome (Type A). Over the last few months, we’ve been left heartbroken after learning how her life is supposed to progress from here. While right now, she’s still the same little girl we know and love, this disorder will lead to devastating health and regression in her future.

We’ve spent hours pouring over whatever information we can access, hoping to find a loophole.

A shortened life expectancy, dementia, loss of speech and mobility, seizures, no cure (yet), and limited treatments are just a few of the things that have kept us up at night praying that it’s just a bad dream. While clinical trials are happening and we are trying our best to remain positive, we quickly realized that regardless we have a very difficult journey ahead. We have gone through numerous specialists and doctors appointments in an effort to gather a baseline of her current condition.

I wanted to begin sharing Caraline’s story for a few reasons.

First, because of the other families in this club with us, going through the same thing. We see you, and while at times it has been difficult to hear your story, we thank you for sharing. It’s made us feel less alone, and we hope that by us sharing it makes you feel less alone too.

Second, because yes we want to raise awareness, yes we want you to donate if you are able, and yes we are desperately asking for your prayers.

But more than that..

While we cannot understand why this has happened to our baby girl, and we’ve spent the last month grieving over moments we might not ever have, we know there is a reason. We know God has a plan and a purpose for her life that is far greater than any plan we had for her. We can only hope that through this devastating situation we can lead others to Christ through a godly testimony, because what greater purpose is there.

While we’ve had many hopeless moments and will probably have more, our faithful God continues to show us that he has this!

It’s in his hands.

Through this seemingly impossible and life-altering trial, He has already shown us He is in control.

Connections to complete strangers (although now considered friends), and to those that were put into our lives long ago that have helped us navigate through these first difficult weeks are just a few of the blessings He has given us. Being able to freely ask questions and feel understood in our grief has been the biggest help.

Not to mention the kind of overwhelming love and support we never imagined we’d need from our family and friends. Please know that Blake and I have taken time every day in prayer to thank God for each and every one of you, as we could never repay you all for your help.

If you took the time to read this, we thank you. The more people that know about this rare syndrome the better!

And if you are a parent reading this I encourage you to hold your babies close no matter how old, and treat every moment as if it is precious- because it is. We certainly will be.

Isaiah 41:10 – Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.

Psalm 61:1-3 – Hear my cry, O God; attend unto my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I. For thou hast been a shelter for me..

To learn more about Sanfilippo Syndrome, please visit: https://curesanfilippofoundation.org/what-is-sanfilippo/?gad_source=1&gclid=EAIaIQobChMIjPLevKXRhAMVBmFHAR3KwwvqEAAYASAAEgKkEvD_BwE