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• Can you share your connection to histiocytosis and how you became involved with the Histiocytosis Association community?

Our son Jenson was born with LCH which initially showed up as red petechiae all over his back.  The pediatric dermatologist called me at work to let me know Jenson had “Histiocytosis.” She indicated she wasn’t an expert, and we’d be treated by Oncology.  She cautioned us about going on the internet for information until we talked to Oncology.

I (Jenson’s mom) went straight to the internet desperate for information.  My search led me to the Histiocytosis Association which provided valuable information, community, and support as we wrapped our minds around how to navigate this bomb that just blew up our lives.

• What has been the most meaningful impact the Histiocytosis Association has had on you or your family?

By age three, Jenson had received 55 rounds of chemo and needed a bone marrow transplant.  His sister Sydney (5 years old at the time) tested positive as Jenson’s bone marrow match and donated her cells. 

While recovering in the hospital, Jenson felt sick and sad.  I tried to cheer him up by showing him a picture of another little boy named Marcus with LCH who also was going through bone marrow.

Jenson looked at me with a smile on his face and said, “I need send him a monkey!”.

We packed up a care package with a stuffed monkey and mailed it to Marcus.

Jenson’s sister Sydney wanted in on the action too and said, “Brothers and sisters go through a lot too.  We should send them monkeys also.  And lolli-pops because kids love lollies.”  And Monkey Grins was born.

Jenson passed away from LCH shortly after starting Monkey Grins, yet his vision of sending smiles and joy to others lives on through our partnership with the Histiocytosis Association. 

Over the last 14 years, we’ve mailed thousands of Monkey Grins care packages to patients and families all around the world.  We love sending smiles!

If you haven’t received a Monkey Grins care package, we’d love to send you one to brighten your day!

• What led you and your family to become a donor to the Histiocytosis Association and why would you encourage others to donate?

We wanted to spread hope and joy through Monkey Grins, reminding other patients and families you’re not alone as you walk this road.

We also have donated to help fund research and other support programs for patients and families through the Histiocytosis Association.  One company I worked at offered a corporate gift campaign where they would match contributions, dollar for dollar, doubling the impact of our gift.  What a blessing!

• What changes or progress do you hope to see for the histio community in the coming years?

We’d hope to see continued research into effective treatments for this disease.  Given Histiocytosis is underfunded, our donations to the association help immensely to fund research.