A Lot Can Happen in 5 Years

It has been quite a long time since we posted an update on Clara Faith.  We're sorry for not keeping this more up to date, but as you all know, life happens.

Clara continues to make incredible progress and is catching up so quickly.  She is doing great in Pre-K.  Clara loves going to school to see all of her friends.  Her teachers have been fantastic this year and have taught her so much.  She is learning ABC's, how to count, her colors...everything a little person needs to learn when they are young.  Being home-bound during the COVID-19 outbreak has let us see her at her finest and teach her even more.  Sometimes she's getting a little too smart for her own good.

Medically, she is showing so much improvement.  At some point this year, we are still on track for her G-Tube to be removed.  She no longer needs it.  We were waiting to get through flu season before we went through that and then COVID happened.  She is still having therapy for her muscle tone, but is getting so much stronger.  We are also starting to try adjusting her thyroid medicine down.  Her doctors believe that if they lower the dosage little by little, they will be able to see how her body reacts.  This will allow them to make a better treatment plan.

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This past week marked 5 years since the start of our medical journey with Clara Faith.  5 years ago, Clara spent 10 days in the hospital, with really no answers at that time.  She has seen over 50 medical professionals, had countless procedures, surgeries and therapies.  Still, nothing steals her joy!

To celebrate her 5 year mark, we made a special video with her favorite song to share her joy with everyone else.  We hope you like it!

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Adam, Julie, Joshua and Clara Faith

Big Update

It has been a while since we have posted an update on Clara Faith.  She has had an amazing 2019 so far.  She continues to make great progress in walking and is becoming much more vocal and able to talk.

In February, she had another Swallow Study to check her progress.  She showed so much

improvement, she was cleared to drink anything she wants; anytime she wants.  The previous surgery she had to repair her throat was a success and there is no more danger of aspiration when drinking liquids.

Her next milestone was being permanently dismissed by her cardiologist.  We will miss him.  He was one of our favorite doctors.  The 2 small holes in her heart have healed.

In April, we had a yearly visit with Emory Genetics.  About a year and a half ago, they placed Clara Faith's gene samples in their worldwide database to see if there were any matches that would help treat her.  Last year, we had no results from the test.

This year, her doctor was able to identify an issue with one of her chromosomes.  One of the stems on one of her chromosomes is broken/bent.  It's very rare.  Her doctor calls Clara Faith her mystery, and for good reason.  For this specific chromosome with this specific problem, Clara Faith is now 1 of 4 known cases in the world.  Yes, 1 of 4.  This is so rare and so new, it does not have a name yet.

So what does it mean?  The other 3 cases all have similar symptoms:  hypothyroid, low muscle tone, etc.  Some symptoms may be more pronounced than others in the individual, but there are similarities.  The oldest person in this study is 11 and lives in London.  Everyone in the study early on were behind in their milestones...walking, talking, etc.  It is a product of having to work harder to hone your skills.  You focus in on one until you get it right instead of multitasking.  Once you conquer walking for example, you move on to talking vs. learning to walk and talk during the same time

The very good news is that the patients in this study, once they do catch up, they are perfectly fine and you cannot tell there was ever any issue early in their life.

We are so thankful for all God has done for her so far and how He keeps working for her.  We knew all along God made her one of a kind, and did He ever!!!  Our spunky little angel will just keep at it, not give up, and change the world one smile and laugh at a time!

Happy 4th Birthday Clara!

It's been a while since our last post, but we all know how busy November and December can be.  Clara Faith turned 4 today.  We are so proud of her and all of the amazing things she has accomplished this year.  Happy Birthday, Little Angel!  Mommy and Daddy love you!

We always make a yearly video for her birthday.  We hope you enjoy the video and song.  It fits her so much!  :)

Houston...we have a walker!

We are so proud of Clara and so happy to announce that she is now walking all on her own!  She still needs her wheelchair because her stamina isn't what the typical almost-4-year-old has, but she just continues to prove how determined she is. There's no quit in this girl!

Genetics Results

We got the initial results from Clara's genetic test.  The great news is there were no major issues found!  Nothing really stood out at all.

There was one gene that was looked at that has a variance...indicating it is not "normal."  In fact, Emory Genetics has never seen it before.

What that means to Julie and Adam is that God made Clara Faith one of a kind and broke the mold.  We knew that already.  :)

So, what will happen now is that they will submit the results to the genetics database that houses all of the genetics information as it is studied.  They will compare genes that might be similar and see if they can make a conclusion that way.  Her results are also going to be passed onto her neurologist and studied there as well.

Thank you all for the prayers through all of this!

Welcome to Clara's New Site

Hey everyone.  We have a new site.  This has been what we have wanted to do all along.  The new clarafaith.com will be her site from now on.  We will post her updates, pictures, videos and a few other exciting things to come here.  All along, more than anything, we have always wanted to tell her story so that others will know, pray and raise awareness.  We fully believe that God will use her story to reach all of you, and then in turn, you may save another child's life by telling them about Clara and her thyroid issues.

To update everyone on her fundraiser, we have moved it to GoFundMe.com.  There is a link to the right on the main page.  Her previous fundraiser site (YouCaring) was purchased by GoFundMe and was shutdown as of 7/31.  We greatly thank everyone that has donated, prayed, and shared her story so far.

Please be sure to share her new blog and subscribe so you can get Clara's updates as they are posted. It will be worth it.  She has lots of pictures, videos and stories to share with the world. We want as many people to know her story as possible.  Thank you all for everything you do!

Previously with Clara Faith

Hello everyone.  All of the posts below are from her former fundraiser site at YouCaring.com.  YouCaring was purchased by GoFundMe and is being shutdown as of 7/31/18.  So, we are in the process of transferring her fundraiser to GoFundMe and decided to start this blog to go along with it.  So please, subscribe (Follow by Email on the right) for her updates, please share and please pray for her.

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Posted Monday, June 25, 2018

First off, we do want to apologize for not getting another update out there until now.  Clara has been doing so great.  She is talking more and more and trying to put phrases together…in between all the silliness of course.  Our most exciting news is that she has taken steps completely unassisted, all on her own and under her own power.  Unfortunately, we are having a hard time getting it on video because she is getting so excited to do it, she starts laughing and loses her balance.  Please continue to pray for her and the medical and therapy team.  Clara and her team are working so hard.  We are so proud of her progress and so thankful for everyone that is caring for her.  Everything is working and we are finally starting to see everything come together for her.

In the near future, we are looking at another surgery.  This would involve her eyes and is to help correct some muscle issues around her eyes.  We'll have more about this once we see her doctors again.  Prayerfully, this would help with her sight and balance when trying to walk also.  Just one more piece of our little puzzle.

On a side note, please pray for Mom and Dad.  As Clara gets older, she gets a little more...let's just say adventurous and stubborn.  Our struggle right now is the need to discipline her like any other 3-year-old for misbehaving, but because she can’t communicate as well, it’s very trying and difficult to teach her what is OK and what is not.  She’s very smart and knows exactly what’s going on and exactly what she wants, but because her communication is behind because of her working so hard on her physical struggles, it’s just hard to be the Mom and Dad we need to be with that barrier.

Thank you all so much for all you do for us and please continue to share to get her story out there.

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Posted Thursday, May 10, 2018

This girl never stops amazing us.  In the last 2 and a half weeks, she has started standing on her own.  Today at therapy, she pushed a shopping cart all by herself with no assistance.  There is a video of her in the gallery.  She is getting so close to walking completely on her own.  We are so proud of her for all of her hard work and thankful that God keeps moving mountains for her.

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Posted Friday, April 27, 2018

Hello everyone.  First, we apologize for not getting this update out sooner.  Clara Faith has had a really amazing week!

This past Thursday (4/19), she had her post-op swallow study.  Going into her throat surgery in January, we knew that it could fix her issues with swallowing normal liquids, it could help some, or it could do nothing.  It was very much an unknown.

We are so thrilled to announce that her surgery appears to have solved the problem completely.  We have begun the process to wane her from honey-thick liquids to normal liquids.  Once she is consistent with liquids by mouth, we can then look at removing the G-tube in her tummy.  We are looking at a year for the tube removal.  It could possibly be done sooner, but we do not want to be in the hospital again during flu season unless it's necessary.

We are so proud of the little fighter she is.  She never gives up!  She also wasn't done there.  Tuesday, her brother turned 9.  In his words, she gave him one of the best gifts ever!  She was sitting all alone in the floor of our living room and decided to stand straight up...nothing around her, no assistance of any kind.  It was all her.  We all just froze because it was so unexpected.  Clara was so excited at herself, that she just started laughing.  She has continued to stand since then, although, only when she wants.  She apparently does not want to perform and show off for people.  :)

Her brother always chooses to go to Krispy Kreme instead of a birthday cake.  So she got to enjoy her first glazed, hot off the line.  The poor donut never stood a chance.

Thank you all for your words, your prayers and your support.  We love you all and are so thankful for you!

·         Posted Wednesday, April 11, 2018

Hello everyone.  It's been a few weeks since our last update and we're sorry about that.  So much has happened since then.  First, we posted a few of Clara Faith's birthday videos for you to enjoy...just a little something to put a smile on your face.

Last week, Clara had her normally scheduled appointment at the aero-digestive clinic with CHOA.  This clinic appointment is an every 6 month appointment.  You are there for several hours and see numerous doctors, then they get together and brainstorm and come back to you with a plan for the next 6 months, all in the same visit.  

The GREAT news is that Clara has made such good progress, they discharged her from the aero-clinic.  She will still need to see some of the specialists, but can do so on an individual basis.

We are so proud of her and the progress she is making.  God is being very good to her and knows exactly what she needs!

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Posted Wednesday, March 28, 2018

3 plastic test tubes, 2 bottles of mouth rinse and 1 over-sized Q-Tip.  That's the sample collection kit for Clara's genetic study.  All it takes is a saliva sample from both parents and the child.  Something so simple that could potentially explain more about our little angel and give guidance to her doctors.  Please be in prayer for this study.  It could tell us a lot, or it could tell us nothing.  Ultimately, we know God has this taken care of already and He knows exactly what is going on because He made her.

Through all the good times, the hard times and the unknowns, we still would never think about trading any of it for the precious, joyful little girl that God has blessed so many lives with.  Thank you all for your prayers and support.  Please continue to pray for Clara and help us share her story.

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Posted Saturday, March 10, 2018

Monday's appointment was a good day.  To summarize, we have chosen to move forward with the testing as a diagnostic tool only.  We have also elected to only have the diagnostic information reported.  

Well, what does that mean?

I'm glad you asked.  That means that we will only know the information that is important to help find a diagnosis and hopefully a better treatment.  Any thing that she might be at risk for when she grows up will not be reported.  Ultimately, God is in control of that anyway.

Clara Faith is getting used to her new wheels.  She really loves sitting up high and being able to see more.  

We also added a video of her from therapy.  She walked the most she has ever walked.  She still needs help with her balance, but her strength continues to grow and her balance will come with time.  Thank you all for your prayers and support!

·         Posted Saturday, March 3, 2018

Monday is the day!  We meet with Dr. Li at Emory Genetics to determine how to proceed.  Please be in prayer for us and the doctor as we make the best decision possible!