Ariah’s Journey with HLH

09/03/2026

🚨 POP QUIZ - Would you recognize the signs of HLH?

HLH (Hemophagocytic Lymphohistiocytosis) can look different from person to person, and its symptoms can overlap with other serious illnesses.

Possible signs can include:

• Persistent fever
• Enlarged spleen or liver
• Low blood counts
• Significant inflammation
• Changes in liver function
• Neurologic symptoms
• Other symptoms related to widespread immune activation

HLH is complex, and having one or more of these symptoms does not mean someone has HLH.

But understanding the condition can help individuals, families, and healthcare professionals recognize when further evaluation may be needed.

Check out this graphic of symptoms and find more information about HLH from: https://www.sobi.com/en/haemophagocytic-lymphohistiocytosis-hlh

🎗️ Rare doesn't mean we shouldn't know about it.

What did symptoms look like for you or your loved one? Share below and help us spread awareness this September.

09/01/2026

💙 SEPTEMBER IS HISTIOCYTOSIS AWARENESS MONTH 💙

We begin this month with the reason behind everything we do — our warriors and our angels.

For the children and adults fighting today.
For the survivors who carry their stories forward.
For the families walking beside them.
And for the beautiful lives taken far too soon. 🦋

They are who we fight for. They are why awareness matters.

Today, we want to fill this space with their names.

💙 If you love a Histiocytosis warrior, share their name below.
🦋 If you carry an angel in your heart, share their name below.

No story or explanation is needed — just their name is enough. If you'd like, tell us a little about the person behind it.

Then share this post and help us carry their names beyond our own community. Every share introduces someone new to Histiocytosis and helps make a rare disease a little less invisible.

Throughout September, Liam’s Lighthouse Foundation will be shining a light on Histiocytosis through education, awareness, support, advocacy and research.

Today, we start with the people who give that mission its meaning.

Warriors. Survivors. Angels. Families.
We see you. We remember you. We fight alongside you. 💙

09/01/2026

🎗️It's HERE!

September is Histiocytosis Awareness Month and we are ready!

For an entire month, we're shining a light on HLH (a histiocytic disorder) that affect individuals and families around the world.

HLH (Hemophagocytic Lymphohistiocytosis) can be rare. It can be complicated. And it can be difficult to recognize.

But behind every diagnosis is a person. A family. A story. A Hero.

This month, we're sharing information, stories, honoring the people we've lost, celebrating the people fighting today, and working toward a future where HLH is recognized sooner and treated better. Follow along this month and comment on posts to help share your journey and story as well!

💛 Help us spread the word.

Follow along throughout September, share our posts, learn something new, and help someone else learn about HLH. If you received your "Go BLUE for HLH Kit," then help spread those conversation starter cards throughout the community!

Because awareness can lead to recognition.
Recognition can lead to diagnosis.
And early diagnosis can change and save lives.

September is for our HLH Heroes. 🎗️

09/01/2026

September is Histiocytosis Awareness Month 💜

This month means so much more to us because HLH is part of Ariah’s story. A diagnosis we once knew nothing about became a word that changed our entire world.

Ariah has faced more in her little life than we ever imagined—treatments, hospital stays, two bone marrow transplants, and so many difficult days in between. Yet through it all, she continues to show us what strength, resilience, and hope look like.

This month, we share her story to raise awareness for HLH and Histiocytosis, to honor every warrior and family walking this road, to remember those we have lost, and to support the research that brings us closer to better treatments and cures.

For Ariah. For every HLH warrior. For every family. For the future.

Awareness • Advocacy • Hope

08/31/2026

08/27/2026

Day +66 | 64 days post-transplant

Another little update on our girl. 🦋

We are still being very cautious, but we’ve slowly been finding little ways to enjoy life outside of our RMH room. We’ve been taking car rides and having little picnics in the car, and honestly, those simple moments feel so special right now.

Our girl is still going strong at 100% donor! Something we will never stop being grateful for.

As Dr. Jordan suspected might happen around Day +70, we are going over a little hurdle right now. Ariah’s ANC has slowly been decreasing, and as of today it is at 900. Thankfully, we are still above 500, which is reassuring. We’re hoping and praying that over the next few weeks her counts begin to rise and find their new stable place.

We’ve also officially graduated to clinic only once a week on Tuesdays! We’ve been on this schedule for about two weeks now, after going twice a week for a while. Every little step toward less medical care feels like another step toward home. 🏡

Eating and drinking continue to be a huge win for Ariah! Girly can EAT. Her team would like to see a little more weight gain, so we’ve been working on sneaking in some extra calories wherever we can.

And as we get closer and closer to going home, our conversations are starting to shift. Instead of talking about getting through transplant, we’re talking about what our life will look like once we’re home. That alone feels surreal.

If everything continues to go well, Ariah should have her central line removed toward the end of September. After having a central line for so much of her little life, I don’t even know how to explain what that milestone will mean to us.

We continue to be so incredibly proud of this girl. She has walked through so much, and somehow she continues to show us just how strong she is.

08/21/2026

Fact Friday! Questions for your Healthcare team.

08/21/2026

Day +60 | 58 days post transplant 💜

60 days down, which means we are officially just 40 days away from Day +100.

Ariah’s appetite is slowly getting back to her baseline, and this girl can eat all day! She is still loving her nuggets, so of course we get them often for her. She’s also been enjoying all kinds of soups, with alphabet soup being her favorite right now, and applesauce has officially become one of her favorite little treats.

We’ve also started eating outside again, which has been so nice. We make sure to stay under the shade since she still can’t have much sun exposure right now while we continue doing everything we can to prevent GVHD. She absolutely loves being outside and feeding the birds. 🐦

Toy Story is still on repeat around here, and our little bookworm continues to love her books. 📚🤍

We also still take her to the hospital chapel and watching her learn how to pray has been such a special gift. Seeing her little hands come together and watching her grow in her faith is something I will never take for granted. It has truly been such a blessing.

We are so thankful for how well she continues to do and for every little piece of normalcy that is slowly coming back.