Jack is a seven-year-old boy full of joy and giggles. Jack resides in Altoona, PA with his mom, Cassie, and his dad, Jim. Jack also has three half-sisters, Rio, Dayton, and Oaklee. He loves spending time at the pool, watching Big Bird and Disney Jr., and quality time with his grandparents. Jack has spent seven years of his life facing many challenges, but his strength and his bravery knows no bounds and continues to shine a bright light through those challenges.
Cassie and Jim often refer to Jack as their IVF miracle. In August of 2011, Cassie went through a round of IVF and on the implanting day they only had two embryos that were viable. Cassie shares, “They implanted both embryos and we have Jack. He was a darn fighter from the beginning. They put both eggs in and he was the one that took.”
At her 22-week ultrasound, Cassie discovered the baby was a boy with no obvious concerns. The rest of Cassie’s pregnancy continued without issue and reached a crescendo with Jack’s full term birth on May 16, 2012. According to the doctors, Jack was a healthy newborn baby, and the family was soon discharged back home to continue their journey.
As Jack journeyed into his second month of life, Cassie started to worry about a flat spot developing on his head; suggestions to reposition Jack as he slept, or use a special pillow, did not help. At Jack’s four-month appointment, the doctor referred him to the Craniofacial clinic at the Children’s Hospital of Pittsburgh to have his head looked at and to determine if he was a candidate for a helmet.
Doctors at the Children’s Hospital wanted Jack in a helmet, but it wasn’t possible due to Jack’s lack of head control. “That was the red flag that hit me”, Cassie admits, and asked the nurse practitioner what would cause him to not have head control. The nurse said that she couldn’t speak to that area of expertise, but that it would most likely be something neurological. Cassie shares, “At this point I am in full-on panic mode” and immediately began calling local agencies to schedule Jack for outpatient therapy to receive an evaluation.
At the therapy appointment, Jack had a seizure and was sent to the Emergency Room. Cassie had always suspected Jack was having seizures, but no one believed them until it was clinically witnessed. It was at this point the doctors realized that something was terribly wrong. They admitted them to the epilepsy ward and hooked Jack up to an EEG. The next morning the doctors confirmed Jack’s seizures and scheduled an MRI.
“I’ll never forget our neurologist at the time, Dr. Gedela. He was the sweetest and nicest man. He came into the room and he told us about the MRI. He was very calming and told us that he would get Jack to his destined destiny and not to worry because he was going to be well taken care of at Children’s Hospital. He approached it to us that this was extremely rare from what he found on the MRI,” Cassie says. Jack had a double band in his cortex so the cells didn’t migrate to where they needed to migrate in utero; he was calling it double cortex syndrome. After the MRI they ordered genetic testing so they could dig deeper.
Jack spent a week in the hospital after this seizure, and because he was aspirating during feeds, a swallow study was completed. Occupational and speech therapy followed and the family learned how to thicken his feeds and hold his bottle. Cassie shares that, “It was amazing to see the decline in him within that short amount of time. Infantile spasms are the worst kind of seizure for a little one to have because they just strip you developmentally and if you don’t get them stopped it’s just going to take more and more away”.
A couple months later, Jack was back in the hospital with pneumonia. Doctors declared that Jack should not eat by mouth but rather through a feeding tube. This was something that Cassie says she was very nervous and hesitant about at first but shares, “When they first put the ng (nasogastric) tube in his nose and I watched him eat with the pump for the first time without struggling, I just cried and cried because it was such a good feeling to be able to see him eat and not struggle. That was when I knew we needed to do this.” Jack had surgery to receive his gastrostomy tube the next month.
During the same hospital visit, genetic testing revealed that Jack did not have double cortex syndrome, but rather lissencephaly. Lissencephaly means “smooth brain” and is a rare gene-linked brain malformation characterized by the absence of normal folds in the cerebral cortex. Along with lissencephaly, it was determined Jack also had Miller-Dieker syndrome. Cassie explains, “They all fall under the same umbrella. If you have lissencephaly you could have double cortex syndrome, or you could have Miller-Dieker syndrome, or you can have just lissencephaly. It is all based on the chromosomes. They all have varying symptoms or prognoses.”
Doctors were able to get Jack’s seizures under control before his first birthday and the family went nine months without a seizure. When Jack was about one-and-a-half, the seizures returned. A CT scan revealed arachnoid cysts in his brain that needed to be removed. During Jack’s first surgery they drained the cysts, but a week later he was throwing up, which is a red flag for someone who just went through brain surgery. Jack needed a shunt due to the cysts taking up so much room in his brain. From February 2014 to the end of June 2014, Jack had 10 different brain surgeries.
Since then Jack has had various other surgeries and is frequently in and out of the hospital due to respiratory issues. He will often get pneumonia and sometimes have to be life flighted to the Children’s Hospital. At one point they were visiting the hospital once a month. Cassie shares with us that this summer has been a particularly hard season for her and her family. “It’s been a rough summer emotionally for all of us just seeing him – it’s been like a slow decline. He doesn’t move as much as he used to. The smiles are still there, but the all out giggles are hard to come by. Things are changing and it’s slow, but it’s kind of like a reality for us,” Cassie admits. “It’s one of those things where you just never know. We try to just stop and enjoy each day.”
Despite the ups and downs of their journey, Cassie and her family have chosen to make the best out of each moment. She often refers to Jack as her greatest teacher, and the lessons he continues to teach her family, and the community around them, are seldom found elsewhere. Jack has a determined and brave spirit that inspires all who come across it.
Time to get loud shouters!
Throughout the month of October we will be shouting love for Jack and three other Pittsburgh area families. It is a great honor to be able to tell Jack’s story and we hope you will join us in getting to know him and his family.
So click here to shop now where every purchase will go towards the purchase of a ceiling lift track for over Jack’s bed. This will help Jack’s family and nurses be able to easily transfer him to and from his wheelchair and move him room to room.
You can also start a monthly subscription and shout love for great families each month!
Join us in shouting loud for Jack!