"Jackson James Fuller was born Thursday, March 27th, 2014 at 9:41 am. He weighed 8 pounds and 4 ounces and was 21 and 1/2 inches long. He was born acting very normal, crying and eating and being a normal little guy. He started not acting ok about 15-18 hours after birth. He was more and more lethargic and floppy. He would not wake up nor eat. Between Friday and Tuesday he was moved from Genesys to Hurley and finally to Children's Hospital in Detroit. During that time he had gotten progressively worse. He was put on a ventilator, and we learned that his brain, and brain activity, were abnormal, and that he was having seizures. It took a full week before he was diagnosed with Glycine Encephalopothy, also known as NKH. Glycine encephalopathy is caused by the shortage of an enzyme that normally breaks down glycine in the body. A lack of this enzyme allows excess glycine to build up in tissues and organs, particularly the brain, leading to serious medical problems. We were told, at that point, that his ventilator was keeping him alive and when they removed it he would probably only live for a few hours. They said he would likely never open his eyes or cry or do much of anything like a normal baby, and that because of the severity of his condition he would probably only live days to maybe weeks. When they decided to take him off of the ventilator, we were surprised to witness that, instead of his breathing slowly fading, Jackson persevered, and his frequency of breaths slowly began to increase without the help of the vent. His ventilator was removed almost a month ago and since then he has been breathing very well on his own! He also opens his eyes and cries now too! He moves his arms and legs and does a lot of normal baby things. He is on hospice care but every day with him is more than we ever expected to get. His outlook has improved according to the doctors but we still don't know how much time we will actually have with Jackson."
Needless to say, Jackson is an absolute miracle, and a tough one at that. He has shown such strength. And because he is so strong willed, we were able to do something that his parents weren't sure they'd ever get to do. We captured all of his little details through a photo session, in the comfort of his home. He went off of his feeding tube, and came into the room ready to rock it out. This sweet boy could not have done better, and he surpassed all expectations, and even accomplished a Carri Beth Photography FIRST when he completed the entire session without peeing or pooing on me OR any of our setups. He really spoiled me through this session, and I am so excited to share some of his beautiful images with you all, especially his mama and daddy. They were both so gracious and accommodating, and I really enjoyed my time with them. Thank you, Stephanie and Patrick, for welcoming me into your home, and sharing your little miracle and his story with me and my lovely assistant for the day, Destiny. I feel so fortunate to have been allowed the opportunity to celebrate Jackson with you. His strength is an inspiration, for sure. It is hard to not admire his will to simply BE!
Happy Mother's Day to you! I hope it is full of sweet baby noises, and lots of warm cuddles.
If anyone would like to show some love for this family, and little Jackson, please feel free to visit the support page that was set up for them.
If anyone would like to show some love for this family, and little Jackson, please feel free to visit the support page that was set up for them.
Contact Carri at:
email: carrimullins@carribethphotography.com
Facebook: www.facebook.com/carribethphotography
phone: (248)678-3601
