Jack and his twin brother Sam were born healthy in June 2013. In February of 2014 Jack was diagnosed with a brain tumor and hydrocephalus. Although we were relieved to learn that the tumor was not cancerous, it was an atypical papilloma with a very fast growth rate. By the time it was discovered, it was very large and damaging. Thankfully the amazing doctors at AI du Pont hospital for children were able to remove the tumor and save Jack’s life. However, several cranial nerves were compromised by the tumor and due to its removal resulting in long term medical complications for Jack. He is now deaf in his right ear, and most significantly, he has lost the ability to swallow. Jack now has a G-tube for eating and a tracheostomy tube to assist him in breathing. In addition he has a shunt from his skull to his stomach to alleviate his hydrocephalus.
It has been one year since Jack’s tumor removal and he is thriving. After a long hospitalization and rehabilitation, Jack has remained mostly healthy and has been partially weaned off of the ventilator support necessary for his daily life. Most importantly he is making massive gains in his cognitive skills and appears to be age-appropriate (with some delays given his 3 month hospital stay). The doctors say these cognitive gains are largely due to the amount of interaction and stimulation he has been receiving and Jack and our family would like to thank the Merrick family foundation for helping make that possible. Below is a picture of Jack with the equipment he needs in order to leave the house and explore his world. Thanks to the generous gift by the Merrick foundation we were able to purchase compact medical equipment not covered by insurance to make it much easier to travel with Jack.
The following picture is Jack with his condensed medical equipment courtesy of The Merrick Family Foundation.
All the equipment in the top picture is also in the bottom picture; it is just smaller!
In addition to the equipment, we have been able to purchase passes (including for the nurse that must accompany Jack on his outings)to educational museums and other venues to provide Jack with new experiences and stimulation and let him do many of the things a medically typical child would be able to. On behalf of Jack and the Grotti Family, thank you so much for all of your good works.