Hope.Love.Grace

The best cardiology appointment Grace has had to date.

Her echocardiogram remained stable, her heart continues to hold on to the improvements gained through treatment, and we have a plan moving forward.

Grace still faces severe hypertrophic cardiomyopathy, and there are many unknowns ahead, but today gave us something important: hope.

Over the next two weeks, we’ll be watching her lab work closely as she begins this next medication wean. Our hope is that her heart continues to show the same stability we’ve seen on imaging.

For today, we’re choosing gratitude, hope, and cautious optimism.

Thank you for walking this journey with us, cheering for Grace, advocating for rare disease research, and believing alongside us.

Here’s to stable labs in two weeks. 💜

We have so much good news to share a little later after we get all lab results back! Best cardio checkup to date! 🙏💕🙌

Grace Update – June 17, 2026

June 17 marks another big cardiology day for Grace.

She will undergo an echocardiogram, EKG, appointment with Dr. Lorimer, and baseline lab work as we prepare to begin another attempt at weaning her off trametinib.

Many of you may remember that in May 2025, Grace completed a gradual 4-week wean from trametinib. Unfortunately, within weeks, her lab work showed signs that her heart was beginning to worsen without the medication. We quickly restarted treatment, and she has now completed an additional 12.5 months on trametinib.

This next step is both hopeful and nerve-wracking. We are incredibly grateful for the extra time, stability, and progress Grace has experienced over the past year. Doctors don’t really know what to do next.

We are hoping for stable results, clear guidance, and continued strength for our sweet girl.

Thank you to our followers for loving Grace! She is absolutely love and light. Everyone who knows her can attest to her sweet soul.

50/50 Raffle tickets for sale! (Purchase link in comments) Friends near and far, need not be present to win! Proceeds go to the Hope.Love.Grace non profit created to build awareness and raise money for pediatric heart failure related to Noonan syndrome. Help us spread HOPE as we share Grace’s story and how LOVE has saved her!

💜 Hope • Love • Grace Update 💜

Hello friends, family, and followers!

Please see the information below about an exciting fundraiser hosted by North Idaho Chaos and the Andi, Jeff, Elliot, Madi, and Kai West family.

We love you West fam!

🥎SWINGING FOR GRACE 50/50 RAFFLE 🥎

At just 7 weeks old, Grace was diagnosed with heart failure and severe hypertrophic cardiomyopathy caused by Noonan Syndrome with a RAF1 mutation. She was given a 20-30% chance of making it to 12 months, and here she is holding steady almost four years later!

Today, at 3 years old, Grace is preparing for a critical medication wean beginning June 17. This next step could help determine whether her heart remains stable and whether she can continue avoiding the need for a heart transplant.

During the Summer Kickoff Tournament, North Idaho Chaos is rallying around Grace to raise awareness and fund research that could change the future for children facing the same diagnosis.

🎟️ RAFFLE TICKETS:
�• 1 Ticket = $5�• 5 Tickets = $20�• 15 Tickets = $50

One lucky winner will receive 50% of the total pot!

The remaining proceeds will support Hope • Love • Grace and research focused on hypertrophic cardiomyopathy and the RAF1 gene.

📱 Purchase tickets here:�https://www.zeffy.com/en-US/ticketing/swinging-for-grace-5050-raffle

⚠️ ⚠️⚠️⚠️IMPORTANT⚠️⚠️⚠️⚠️
�During checkout, Zeffy will ask if you’d like to support their platform. Please select “Other” and enter “$0” if you’d prefer your entire purchase to support the fundraiser. This does not affect your raffle tickets or your chances of winning.

Every ticket purchased helps spread awareness, fund research, and support a little girl who continues to inspire everyone around her with her courage, joy, determination, and resilience.

Thank you for loving our family so well. We are endlessly grateful.

💜 United on the Field.
Making an Impact Together. 💜

💜🥎 Go Chao Go!

Go Gracie Go! 💜🥎

Our LCHS family continues to show up for us in the biggest ways. 💜



LCHS helped kick off our very first major Hope • Love • Grace event this past January, and now our extended basketball family continues to rally around Grace and rare disease awareness through Swinging for Grace at the North Idaho Summer Kickoff.

What makes this extra meaningful is a very special coach behind a North Idaho Chaos team that is part of our LCHS basketball village. These connections matter. This is what community looks like. People coming together, showing up, loving loudly, and helping reduce the stigma surrounding rare disease and medically complex children.

We are deeply grateful for every family, coach, player, friend, and supporter walking this road with us. 💜

Go Wolves! Go Chaos! Go Grace Go!

A 14-year age gap between sisters changes the relationship in beautiful ways.

It’s not just sisterhood.
It’s friendship, mentorship, protection, and advocacy.

Big sisters with that kind of age difference see the world through a different lens. They learn empathy early. They learn to celebrate victories others might miss. They learn how to speak up when something isn’t right.

Sometimes the very first advocates in a child’s life are the ones standing right beside them.

And in our family, that advocate happens to be a very proud big sister.

Ever hear of a Big sister-like mama bear?

Lil has paved the way as a fierce, protective big sister, learning about her condition, attending doctor’s appointments, listening to devastating updates, learning about medications and research projects, attending meetings & advocacy appointments, and everything in between to help fight for her little sister!