Jaelynn is 11 months old. She is full of curiosity and a very happy baby who loves to laugh, clap and dance. Her parents never have to wonder what she is thinking, as her facial expressions tell everything! She is the youngest of five siblings and she loves getting attention from all of them.

From her first day of life, everyone commented on Jaelynn's tongue being so cute, because it stuck out. At her first appointment with her pediatrician, when she was less than a week old, the pediatrician asked if Jaelynn’s tongue was out very often. It was out the majority of the time. The doctor mentioned it could mean something but didn't express much concern. Jaelynn’s mom saw a diagnosis of "macroglosia," an enlarged tongue. One of the causes of macroglosia is Beckwith-Wiedemann Syndrome (BWS). Reading about it, Jaelynn’s mom knew in her gut that was what Jaelynn had. Jaelynn had seven features of BWS: high birth weight, enlarged tongue, "stork bite" birthmark on her forehead and nose, herniated umbilical cord, low blood sugar, lethargy, an occiput, and midface hypoplasia. There were too many signs to ignore. At Jaelynn’s next appointment, she asked the doctor for reassurance and was shocked to be told that that she was being referred to a specialist for evaluation for BWS.

They visited an ENT and a geneticist. Jaelynn was only 4 months old when the geneticist walked in the room and immediately said she had BWS. Jaelynn’s treatment includes following BWS cancer screening protocols, a tongue reduction and lots and lots of love and laughter!

Jaelynn’s family hopes she will aim for the stars and go further. They hope to spread awareness about BWS amongst the medical community for early diagnosis, so screening protocols can be followed. They dream that one day cancer will be a thing of the past.

Jaelynn is their hero because she had a broken collar bone from her birth that was undetected for two weeks but she was the best baby anyway. She is at higher risk of kidney and liver cancers because of BWS and will have tumor screenings by blood every 6 weeks and by ultrasound every 12 weeks. Screening will continue until she is 8 years old. This definitely makes her a hero!

Quote from Jaelynn’s big brother: “You're bringing THAT home? UGH!" Two days later: "I guess she is cute!"

Information provided by Honey Tapia, Jaelynn’s mom
March 2015