On Dec 12, 2019, our lives were forever changed. That was the day Derek was diagnosed with an Arnold Chiari Malformation. Chiari Malformation is when a person’s skull is too small for their brain and the brain starts to grow into the spine. Derek’s Chiari was quite large at 18 millimeters. Derek had always been a clumsy baby. He received occupational and physical therapies since he was 18-months old but I had always felt that something was not quite right. He often complained of headaches, walked on his tiptoes and complained that his feet felt, what he called, ‘soggy.’ We later learned that soggy feet meant a decreased sensation or pins and needles. An MRI was ordered and on Dec 12, my family met with Dr. Ronald Jacoson to go over the MRI of Derek’s brain and spine. When he told us it was Chiairi, I immediately asked, ‘How do we fix this?’ Dr. Jacobson felt Derek was a great surgical candidate and he called a neurosurgeon, Dr. Tobias right there in the office.. Dr. Tobias agreed to squeeze us in that week. On the day we met with Dr. Tobias, it felt like we waited an eternity. He examined Derek and agreed with Dr. Jacobson that Derek was a good surgical candidate. He told me that he usually has patients wait a few months and monitor their symptoms, however I think he sensed I was not willing to wait! Derek’s surgery was scheduled for February 10, 2020 at Maria Fareri Children’s Hospital. When we pulled up to the hospital, it reminded me of a big, beautiful doll house. When you enter inside, there is a magnificent fish tank, and a baseball mural along the walls. Dr. Tobias took Derek in for surgery and my family and I waited for what felt like an eternity. Six hours later, Dr. Tobias came out and assured us everything went well. In the next breath he said, ‘You were right.’ He definitely needed this surgery. Derek’s Chiari was in fact larger than 18 millimeters and his skull was very tight. Derek recovered in the PICU for the first 2 days. The nurses were so attentive, constantly checking on Derek and making sure he was comfortable. On the third day, Derek was ready to move to a regular floor. His room was in the Heroes wing of the hospital. Derek was not an easy patient. He refused to get out of bed and even punched the nurse. Once the physical therapist, Greg, came to see him, all changed for the better. Greg was warm and nurturing and encouraged Derek to get out of bed. The first time Derek put his feet on the floor and took those first steps, is the first and only time I cried. If it were not for Greg, I don’t know if Derek would have felt confident enough to get up and start walking. As the third and and fourth day progressed, Derek enjoyed playing in the playroom and in the big fire truck. On the fifth day, which was Valentine’s Day, Derek was released from the hospital. It is now two years later and no one would know that Derek even had surgery. The MRI of his brain looks great and has plenty of room to grow. Derek enjoys playing baseball, doing tae kwon do and swinging from the monkey bars. He has aspirations of being the next American Ninja Warrior! On behalf of myself, Derek and my entire family, we are forever grateful to the doctors, nurses, therapists and all the staff of Maria Fareri Children’s Hospital. If it were not for your care, Derek would not be where he is today. We are proud to have Derek be an ambassador for the hospital and help to raise money for such a special place that cares for so many children just like him.
