A letter from a mom:

My name is Jessica, and my daughter is JoJo. We are 17 months into our hospital stay at Seattle Children’s Hospital.

Little JoJo is 8 years old and has been diagnosed with a rare, progressive degenerative and terminal condition called Leigh Syndrome, which can cause blindness, deafness, seizures, loss of mobility, loss of speech, enlarged heart, feeding problems, breathing problems, liver problems, kidney problems…and more…and has a typical life span of 2 to 3 years. Her 9th birthday is next month so she has done well!

We look at every day individually and only focus on the blessings of that day because we are aware that tomorrow is never promised.

During the beginning of our stay, the hospital was not allowing events or fun opportunities to take place anymore due to covid restrictions. As the months rolled on, events and special visitors started to happen again such the as a visit from UMPS CARE Charities in June.

Being able to participate in the UMPS CARE event impacted us in several ways.

Here’s how. Just the opportunity to get out of our hospital room to go to something fun. Picking out “princess fairy monkey” with the purple sparkle dress. Purple is JoJo’s favorite color. It was important to JoJo to bring her new UMPS CARE friends a thank you card, and to share the story about her “Traveling JoJo” – learn about how you can participate at bikers4jojo.com

Spreading joy to others is her favorite thing. The cuddles and snuggles and smiles and joy and entertainment that happened for JoJo the day she was able to get a new stuffed friend was so special. It matters also because there is back story to stuffed animals for us as well. A year before this admission JoJo decided on her own at age 6 to clean up, wipe down, sort out all her plastic or hard toys to donate to other kids at the hospital because she could no longer safely play with them (due to loss of motor control). She took very detailed time even with being in her own state of health decline, to think of other kids who could benefit.

JoJo donated almost ALL of her toys. At age 6.

Since then stuffed animals are an item that then became so important to her. So “princess fairy monkey” is one of those precious items.

The day after we came down to get her special bear we learned there were a few bears left. We knew about a baby in a neighboring room and that family couldn’t participate in UMPS CARE event. So JoJo picked out a bear and mermaid outfit to make sure the baby got a special stuffy too and brought it back up for her.

Without the opportunity to have UMPS CARE here and donating these special items, these special moments never would have happened. So yes, your program and what you do is meaningful to families, probably in more ways then you know.

And if anyone there would like to know more about JoJo or follow her story please check us out on bikers4jojo.com and let her continue to spread joy with you.

Thank you,

Jessica (and JoJo)

Give the gift of Build-A-Bear joy to a child like JoJo this holiday season!

Donate to the 100 Bears For The Holidays campaign today!

JoJo and her mom, Jessica, had a blast meeting umpires (L to R) Brennan Miller, Derek Thomas and Mark Carlson during an UMPS CARE Charities hospital visit at Seattle Children’s Hospital. The Mariner Moose added an extra dose of fun! (Photos by Ben Vanhouten)