Did you know that March 26th is National Epilepsy Awareness Day?
Last week, we made a donation to hope for HH in honor of Jenna’s daughter, Jadyn. Jadyn was diagnosed with a rare benign tumor on her brain causing gelastic seizures, Hypothalamic Hamartoma (HH) in 2010.
Jadyn was born on September 6, 2007. She was a healthy newborn, ten fingers, ten toes, and two ecstatic parents that couldn’t wait to take home their first child. At around six months, they began to notice something abnormal with Jadyn. She began to have episodes several times a day where she would half laugh and half cry. During these episodes, her eyes would become unfocused and unresponsive. Jenna and her husband brought their concern to their pediatrician, who quickly dismissed their concern, and reassured them ‘that it was just a stage’.
For two more years, they kept hoping that she would either grow out of these episodes or be old enough to tell them what/how she was feeling. More noticeable now, but only 5 seconds in length, family members began to notice. Jadyn even had an episode in her pediatrician’s office, and again Jenna and her husband, Nathan, were reassured that everything was fine. One Sunday afternoon, Jadyn had and extraordinarily long episode. In their hearts they knew something was wrong and decided to get a second opinion.
Jenna and Nathan took Jadyn to Children’s Hospital where the doctors ordered some testing. The doctor returned and diagnosed her with a rare benign tumor causing gelastic seizures, Hypothalamic Hamartoma (HH), their hearts dropped and questions filled their minds. The doctor informed them that they had two options try medication and if the medication did not work, surgery. For 17 days Jadyn was seizure free. During this time, Jenna and Nathan researched HH and discovered that since HH is so rare the only hospital that will perform the necessary surgery is in Arizona. Despite medication tweaks and their best efforts to avoid surgery, Jadyn’s seizures returned. Surgery was their only hope.
Along with the Grandparents, they made the decision to go forward. Her surgery was scheduled four days before her 3rd birthday on 9/2/10. The procedure was to take six hours, including a pre-MRI, two hours surgery, and a post-MRI. During this time they prayed for everything to be okay and for Jadyn to be seizure free forever. Good news came as the smiling doctor walked out – everything went well and the tumor was completely removed.>
Jadyn has been seizure free since her surgery date on 9/2/2010.
While Jadyn’s story is remarkable, it is not typical. Jenna and her family were lucky and thankful that they “caught” her condition much earlier than the average age of 7. Research is still needed and awareness must be spread in order to help cure HH and make Jadyn’s story typical instead of remarkable. Jenna and Nathan would like to spread the message to always trust you parental instincts.
If you would like to learn more or donate to Hope for HH, please visit their website at http://hopeforhh.org.