Chase D. - Quilt Finished in 2009

Born: January 1, 2009

Illness: Prematurity, Mitochondrial Cytopathy

Chase and Trevor's quilts were made from squares made by one stitcher, Carol. 

Thanks so much for these adorable squares!

Chase D.'s Story

Written by Chase's mom Danielle in June 2009

Chase is a fraternal twin (brother to Trevor) born on 1-1-09 at 28 wks gestation. He spent 76 days in the NICU and had a lot of complications due to prematurity. His state screen came back abnormal for amino acids and we had an idea that he had Mitochondrial Disease. Two of his older brothers have it, one whom passed away last year at 19 months old (Ryan).

Chase was admitted to the hospital for a bacterial infection that entered his blood stream and settled in the bone of his hand on April 15, 2009. He had emergency surgery to remove the infection and have a central line placed for antibiotics. He also started NG feeds only allowed to orally eat for 20 mins (he took 1 hr to eat 4 ozs), in an attempt to help him gain weight. One week later he was taken back to the hospital for another bacterial and fungal infection in his central line. He translocated gut bacteria into his blood and the bacteria and fungus settled in the line. They removed the line and treated him with 5 different very strong antibiotics. It was at this time we knew he had Mitochondrial Disease. He stopped gaining weight even on all tube feedings. He needed 2 blood transfusions during these admissions (and 2 when in the NICU).

Chase is now home and has changed in a dramatic way. He can no longer hold his head midline for more then 2 seconds. He sleeps for 22 hours a day. He has lost his muscle tone in his neck, face and torso. He has not put any weight on despite high calorie formula tube feeds. He tremors when he initiates movements in his limbs. He has developed hypoglycemia in between feeds. He is fed over a 2 hr period because of his reflux to which he can't be medicated for. He will be having a Gtube placed very soon and we expect it to be rough on him and we hope he doesn't get a bacteria infection. We also hope to start his Mitochondrial Disease supplements very soon.