Bakersfield.com

By: Maria Powell

Three local teddy bears are joining their brothers in traveling the globe.   These bears are inspiring because their mission has more to do with providing hope than geography lessons.  Inspiring, like the child at the heart of this program.  These “Stuff and Snuggle” bears named Buddy travel with a children’s picture book, informing all who read it about a genetic condition called Neurofibromatosis. The book features an outgoing Kern County kindergartner named Jaxon who is especially anxious to share his story with the world.

 

For children with Neurofibromatosis, life is full of doctor’s appointments. It is impossible to know how seriously the condition will affect them, so these appointments are essential in detecting problems early. 

 

NF, as it is commonly called, is most known for causing tumors. Some of these tumors appear in visible areas like the skin, while others can be devastatingly invisible to the naked eye, causing serious internal symptoms and permanent nerve damage. Bone deformities, hydrocephalus, and learning delays are also NF characteristics especially devastating to children. 

 

NF’s unpredictability is part of its curse. Waiting for symptoms to appear can be emotionally paralyzing to patients and parents. Many NF children begin having MRI scans before they even learn to walk, leaving their parents living from scan to scan, trying to create typical life experiences for a child whose life may be far from typical. These families need to know that they are not alone. 

 

Buddy is on an international vacation to do just that. He is visiting these amazingly atypical children with a message in mind. Although their bodies are often plagued with health problems, their spirits are far from disabled. They need to know that there are others who understand what it is like to have the disorder and that NF does not preclude fun or happiness. NF can even bring new friends and new experiences. The book traveling with Buddy tells a child’s perspective of NF, showing the experiences (and smiles) of a few “NF Buddies.”

 

The child who inspired the book is amazingly optimistic, despite beginning each week having his blood drawn. His Wednesdays are invested having chemotherapy. Adults put in the same situation might be bitter. But Jaxon is thrilled.  He greets complete strangers by excitedly announcing “I have good news – my tumor is going away!” And he looks forward to chemo. It’s a great opportunity to do his favorite activities – chatting with interested adults and making beaded necklaces. The tumor has damaged his optic nerves, leaving him legally blind, but beads are worth the challenge. He loves to give the necklaces as gifts, sharing smiles with strangers and friends alike.

 

With the addition of three more bears, Buddy, the book, and Jaxon’s contagious optimism will have the ability to visit more children around the globe. To date, Buddy has been spotted throughout the United States, Canada, and Australia – and his journeys have only just begun. 

 

Jaxon would love to share the bear – and book with Bakersfield too! To learn more about Neurofibromatosis and this traveling bear program, visit  www.nfcalifornia.org or email staffwriter@nfcalifornia.org. Those wanting to follow Buddy’s travels, can visit www.caringbridge.org/visit/buddybear