Hope.Love.Grace

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!

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

❤️thewestfamily

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!

Merch requests? Water bottle stickers? Tank tops? Hats?

We are ready to start processing orders! After we receive feedback on what folks may be interested in, I will pin a Google Order form to this page to college orders.

As always, thank you for walking this journey with our sweet girl!

Grade Update + NEW HLG Event this summer coming June 19, 20, and 21!

A HUGE thank you to Andi West and the North Idaho Chaos for bringing another HLG to our community.



https://giving.mountsinai.org/site/TR/DIY/General?pg=personal&px=2931822&fr_id=1092

Little Miss Grace has had such a sweet spring. 💛 She’s learning so much at preschool, slowly coming out of her shell a bit, and continues to be one of the most joyful little humans we know.

On June 17th, we head back to Sacred Heart for an echo, EKG, and baseline lab work as we prepare for our second attempt at tapering off the life-saving medication trametinib. Last May, we attempted this process and within four weeks her labs showed signs of heart failure, so naturally this season brings a lot of emotions and cautious hope with it.

We’re grateful for every good day, every milestone, and every person who continues to love and support our girl.

Shown with her idol, big sissy.

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!

Grace had a cardio check last week with continuing micro glimmers! Her heart hasn’t gotten worse AT ALL! We are seeing her “grow into a bad heart.” The two other options were 1) the unthinkable or 2) transplant. When Grace was born and she began the miracle treatment of trametinib, we were warned her heart was so bad she wouldn’t have a reduction of her left ventricle wall like many children have had, but our absolute best case scenario would be “growing into a bad heart.” We are thrilled to know the medication put a stall on her heart failure. We will continue to love, admire, and appreciate the absolute miracle she is to all who know and love her.