Declan: Life with low-grade glioma
Each day, 13 children and teens are diagnosed with brain tumors. They are the Pediatric Brain Tumor Foundation’s Stars, and the Starlights series shares their inspiring stories. This Starlight features Declan H. from our Georgia Chapter.
Four years ago, Kimberly H. was pregnant, expecting a bouncing baby boy with her husband Daniel. During a routine sonogram, they were told their baby had a cyst on his brain. A few weeks later, though, a sonogram revealed no cyst, and on August 20, 2013, Shaun Declan, was welcomed into this world.
As teachers, Kimberly and Daniel were aware of speech delays in Declan as he grew. They realized towards the end of 2014 that not only was his speech delayed, he also seemed to have constant congestion. Kimberly questioned if there was hearing loss, and so they decided to see a doctor. An ENT found mild conductive hearing loss and recommended allergy testing and ear tubes.
Declan had tubes put in his ears in January 2015; however, that same month, Kimberly and Daniel noticed a lazy eye. At first, it was only captured in photographs. This rapidly changed, though, and over the next few months Declan saw not one but two eye doctors. He was given glasses, a patch and multiple prescription changes.
When they reached out for a second opinion, Declan’s doctor said he was too old for one type of eye crossing, too young for another and asked about other neurological issues. It was in that moment that Kimberly and Daniel went back to the pregnancy and cyst in the sonogram.
In July 2015 Declan had his first MRI at the suggestion of his eye doctor, and it revealed a low-grade glioma in his midbrain, found to be displacing his third cranial nerve.
Unfortunately, due to its location, the tumor cannot be removed or even biopsied. Since his diagnosis, Declan has had Strabismus surgery, which helped immensely with vision issues. He continues to have MRIs every three months so his team of doctors can monitor his tumor.
The most stressful part for Kimberly and Daniel is that until the tumor starts impacting Declan or growing faster than he’s growing, nothing else can be done…they just sit and wait.
Kimberly describes Declan as “busy and full of life, bringing so much joy, laughter and goodness to our everyday lives.” He stays in the moment like every other little boy, not realizing he is living with a brain tumor, one described as “abnormal” by so many doctors.
One day, Kimberly and Daniel know they will have to explain it all to him, but for now Kimberly says “we just want to do the best we can in everything that comes with raising a child with a brain tumor, as well as hope and pray a procedure is found to deal with situations like this. This is only one of the reasons we are so thankful for the Pediatric Brain Tumor Foundation. We know more research needs to be done.”
Special thanks to Declan’s mom Kimberly for sharing his unique journey with the Pediatric Brain Tumor Foundation’s Georgia Chapter.
You can give children like Declan a healthy and happy future. Visit curethekids.org/get-involved/chapters/georgia/get-involved/ to join the PBTF in fighting for these Stars’ futures.
