Friends and teammates of Jamie have started this fund to help his family purchase expensive medicine and transportation to mobilize his growing son. The Rabine Group Foundation (RGF) will match up to $2,000 raised. After we reach that goal, the RGF will then triple up to an additional $3,000 raised. That means that if we can raise $5,000 on this page, then Ty will receive $13,000 to help with his expenses.
Ty Garrett Nicolai’s story:
On January 9, 2014, Ty Nicolai, the third son of Jamie and Rachel Nicolai, was born. Initially, Ty was diagnosed with hypothyroidism and was placed on medication. However, at 5 weeks old, Ty was admitted to Children’s Hospital of Wisconsin for sepsis. When the doctors tried to figure out why Ty was so sick, they found holes in his heart. Ty was born with 3 VSD and 1 ASD. Ty was a fighter and recovered. In March 2014, Ty was diagnosed with 1p36 deletion/duplication. 1p36 deletion is a deletion of some of the DNA on the tip of the first chromosome. This genetic disorder can cause a host of issues and every child is different. In general, most children have a seizure disorder, heart conditions, and developmental delays. In Ty’s case, he was born with hypothyroidism, polymicrogyria-seizure disorder, heart condition (ASD/VSD), feeding issues, and developmental delay. Still, Ty has surprised all of his doctors on how far he has come.
In Ty’s first year of life he had issues with seizures not being controlled but the doctors worked a miracle and in October 2018 Ty will be seizure free for 4 years. He will always need to be on medication to keep them under control. Ty’s VSD/ASD have closed but he is watched closely due to risk of cardiomyopathy that can occur. Ty’s hypothyroidism is well controlled with medication.
Ty has global developmental delays. He is 4 years old, but acts and plays like a 5 month old. Ty has difficulty with holding his head up, sitting upright, and rolling. To assist with his development, Ty attends the life skills program at Greenwood Elementary in Woodstock. It is a great school, and he gets most of his therapies there. He also attends speech therapy and physical therapy at Milestones Clinic in Crystal Lake.
Ty was progressing well up until March of 2017, when he had the flu A and was in the hospital for 2 weeks. Since then, Ty has been admitted to the hospital 8 times for pneumonia. Due to this, Ty uses oxygen at night and had a feeding tube placed to assist with feeding. With each admission, Ty is having a more difficult time fighting the infections. We are now pursuing a new treatment IV-IG, immunoglobin infusion, to assist his immune system to fight the infections and to keep him out of the hospital.
Through all of this, Ty has always come out happy and smiling.
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- Melissa Carnrite
- Rita Popenhagen
- Quinton James
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