It’s that feeling of dread every time I open the letters from our health insurer. Is it going to be a denial? No matter how many times a denial happens, I go into panic mode. Instantly, I am calculating how many phone calls will be made, how many letters to write, how long will it take. These inevitably come on a Saturday so my panic gets to settle in all the way until Monday.
When we started this foundation three years ago, our goal was simply to get another family a handheld blood analyzer so they could have a little more control over a medical condition that takes a lot of guesswork. And no one should have to rely on guesswork to keep their children from ER trips and hospitalizations or worse. That goal has been achieved 14 times since. We have nothing but gratitude for the support that has come in to make this happen and we plan to continue this work.
Connor, now 17 years old, was born with a rare type of brain tumor called hypothalamic hamartoma (HH) . Connor experienced gelastic seizures (a symptom of HH) from birth. Gelastic seizures are rare and involve episodes of nervous laughter with no apparent trigger. The seizures were never diagnosed until he began having complex partial seizures.
If you were unable to attend our Meet the Experts webinar with Marci Serota, RDN …
Lillian Knowlton, from Chesapeake, Virginia, was diagnosed earlier this year with a craniopharyngioma brain tumor. We met Lillian’s parents at the Pituitary Brain Tumor Day at Children’s Hospital of Philadelphia this past March while she was inpatient and post-op from a tumor resection. Recently, Jennifer, Lillian’s mother, reach out to us because of the struggle of getting her sodium under control. She said Lillian was basically confined to the house because of the constant monitoring.
Isaac, age 7, from Eugene, OR, was diagnosed with a craniopharyngioma brain tumor just this past December. The after effects of tumor treatment included difficult-to-manage diabetes insipidus with fluctuating sodium levels and an unreliable thirst mechanism due to hypothalamic damage.
For those out there that have followed our story since Alex’s diagnosis, you might have heard me say over and over again that there are blessings in this journey. Sometimes, on the hard days, it is a reminder to myself to get through that day, like an affirmation, and sometimes, when I say it, it’s a a joyful expression. Yesterday, there were many moments of joy.
In the fall of 2013, he was 8 years old and had just finished his first season of tackle football; he loved sports of all kinds, loved building with Legos, loved history and science. He was what you might refer to as an “old soul.”
Hypothalamic Obesity (HO) can be a devastating co-morbidity of brain tumors around the pituitary/hypothalamic axis. The condition can mean uncontrollable hunger and weight gain in patients due to damage to the hypothalamus which acts as the control center for our hunger and thirst. When this mechanism is damaged, the body can be tricked into starvation mode, making the patient constantly hungry and storing calories as fat.
Two-year-old Anastasia Rafter from Niagara Falls, NY, was diagnosed with an aggressive tumor in her optic chiasm on December 20th, 2016 at 8 months old. The tumor caused her to go completely blind. She failed all standard chemotherapy and underwent surgery in October 2017 where 50% of her tumor was removed but the surgery destroyed her pituitary gland.
