Patient Story: Ty Skelly

Currently, Ty is a 13 old boy who is in grade 8 and attends Springfield Middle School.

At the age of 22 months, I received a frantic phone call at work from my mom, who was babysitting Ty at the time, that he was having a seizure. Paramedics were called and Ty was rushed to Children’s Hospital. The ER staff were able to get his seizure under control and a CT scan revealed a lesion in his brain. By the age of 2, Ty underwent 2 biopsies of the mass. Ty was diagnosed with a rare type of brain cancer called Glimatosis Cerebri. Ty underwent another surgery to debulk the tumor, however, the whole tumor could not be removed. After the surgery, Ty began his journey with chemotherapy and MRI scans every 6 months. The chemotherapy was very harsh on Ty’s little body and he is still living with the affects from it. The high doses of chemotherapy damaged his pituitary gland and he stopped releasing growth hormone. Ty has to have a needle 6 times a week of growth hormone to grow. Also,Ty’s adult teeth did not develop roots from the chemotherapy. When Ty stops growing, he will have to get extensive dental care.

In grade 2, Ty started to experience seizures since his diagnosis. Since then, Ty’s seizures had increased in number and severity. He has been on many different types of seizure medications to control the seizures without success. Due to the increase and severity of the seizures, Ty’s quality of life had been declining over the years.

Ty had surgery under the care of Dr. Serletis and his team on June 5, 2018. Ty was in PICU for a week and a half and was discharged after two weeks from the Children’s Hospital. Since the surgery, Ty has not experienced any type of seizures that he had previously experienced.

Life had drastically changed for Ty since the surgery. He is able to be more independent and can do more things on his own without constant supervision. He loves teasing and playing with his little sisters.

He laughs more and has life is more enjoyable. He is able to take on more responsibility for himself and become a normal teenage boy. Ty will always struggle with academics but his hard working attitude and perserverence will allow him to succeed in life.

For my husband and I, this surgery has been life altering for our family. The stress of worrying that Ty will have a seizure and hurt himself has been eliminated. As parents, it was devastating watching your child have 5-8 seizures a day and watch the quality of his life gradually decline. The surgery has given us a new way of life that we have had to adjust to.

Ty loves sports! His favorite sports are soccer, volleyball and badminton. Currently he is playing on school soccer and volleyball teams and plays badminton with a club. Physical exertion was a trigger for his seizures and now he can play in a game without having to worry that he is going to have a seizure. His energy level, motor skills and love of sports have increased. He has a smile on his face and does not want to miss out on anything.

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