Medical Support for Super Colbie

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We would like to introduce our son Colbie James. He was diagnosed while still in Utero as having "Water on the brain" what is called Hydrocephalus. However upon further review via MRI Colbie has found to be diagnosed with a rare brain malformation called AVID Complex or now Syndrome. We were not prepared for the outcome of this new diagnosis which had the high possibility of Colbie not surviving in utero let alone the birth process or life outside the womb. We had 6 months left with Colbie in utero which I had to quite my job as there was countless appts with Fetal Medicine upon further MRI, Ultrasounds. We had to check every inch of his body as this syndrome also has club pallet, club foot, facial anomalies. heart defects, organ defects, valves and chambers of the heart defects among many other issues that could affect the life of Colbie. Some anomalies we wouldn't find out until he was born. These were the possibilities that could stop life the moment he was born into the world. AVID Complex for Colbie is isolated to the brain and some would say that is a good thing, which in respect it can be for the most part. However, one must be reminded the brain is what powers the body. Colbie has enlarged Ventricles in his brain, all four are stretched out. He has a Interhemispheric Cyst right on the third and fourth Ventricle the size of a golf ball at birth. Keep in mind this is an infant brain so the cyst did not allow for growth of his brain. It attached to the wall and ventricle which caused a blow out of the left side ventricles. Due to the cyst his brain did not grow other parts and he is missing the thin layer of membranes called the Corpus Collesum (these are the nerve fibers that connects the two halves of the brain), he is also missing the Septum Pellicudum, and his pituitary gland is thinned. This also caused underdevelopment to his Optic nerves. Optic nerve damage is irreversible. He was also born with Hypospadias which is a penile and Urethra genetics anomaly. Due to this severe diagnosis and from prior studies done in 2012, the chance was high that he would not survive due to uncontrollable seizure activity. We have always been a two income family and unfortunately at 24 weeks pregnant I could no longer work due to weekly testing and monitoring Colbie. His head had already been well over 100% and the fear was for my life and Colbie's with such rapid head growth. This had not truly affected our family financially just yet as I was put on leave and used up all vacation, and maternity leave. However, our financial hardship would truly began with his birth and his life currently on earth.

Colbie was born on April 30, 2019 at 7:03 am. He had a scheduled delivery at University of Utah and had 4 teams waiting for his arrival. He would then be immediately transferred to Primary Children's Hospital. His birth ended up being an emergency C-section as I had developed preeclampsia and Colbie was not tolerating the surgery and his heart would drop. He did not come out crying. He remained in the NICU for four weeks. He was scheduled for his first brain surgery 2 weeks after NICU discharge. On June 8, 2019 Colbie had undergone his 1st brain surgery which was an ETV/PCP. Colbie came out of surgery having seizures that they could not control and had to be sedated. Within the first 2 days Colbie's surgery had failed, he now needed a Shunt after all. Colbie's brain had now collapsed and his seizures would not stop unless he was heavily sedated. They would not perform surgery until he was stable. Ten days pass and it is June 19. Colbie's heart cannot take the pressure and will not go above 60 bmp. He cannot with stand surgery until seizures are controlled. They decide to temporarily place a reservoir to help with the pressure until he is stable with seizures. Colbie remains sedated until July 3rd, his heart is not doing well again and they finally decide on his 3rd brain surgery to place a VP Shunt. Colbie came out of surgery sedated, his seizure meds were working at the moment and his heart has gone back up to 140-155 bmp. He seemed stable for the moment. Later that evening he would develop a low grade fever of 100.2 and would remain with this fever at discharge on July 12. Colbie was home and seemed well, he was on Oxygen, and a feeding tube and we had homecare teams and a nurse that came out as ordered. All seemed well for the next 17 days. On July 29 at 0430 our Colbie had become unresponsive to stimuli and was life flighted to PMC. His heart was in tachycardia and his blood pressure was high, he still had that low temp of 100.2. They drained his shunt line and found Colbie had indeed had a Shunt Infection. The gram negative came back with E.Coli and it was the worse of the few strains. Colbie had almost lost his life twice as his heart had stopped beating, he remained in PICU for the first 2 months. He would undergo over 16 brain surgeries to save what was healthy brain tissue. He would have a complete washout/dump of his CSF and have his brain filled with saline in hopes to clear the infection. What most people do not realize is that E. Coli makes boils filled with puss that are constantly releasing toxins into the body. Colbie's MRI showed lesions and bright spots of infection. We had met all obstacles and were being told if the washout did not work to prepare for our son to die. We had team meetings of all his care givers and the hope of surviving was slim. We now were making plans with palliative care and the possibility of hospice care. Colbie would have his washout and no immediate signs of it working. They gave Colbie 4 days of a "Holiday" off for no surgeries and just relax time. Our little family of four came to the realization that could be our last times with Colbie. We had another MRI a week later and by all things good Colbie had no signs of boils nor any bright areas that were signs of additional damage. We had two more weeks of PICU and once stable he was sent to the regular floor. Colbie would remain here until his WBC would drop to a level deemed safe to do home antibiotics. Colbie had been hospitalized since birth until Oct 10, 2019. He was readmitted 2 days after discharge for uncontrollable seizures. He continued at home antibiotics with a PICC line with my care and a Nurse. Colbie would remain without a Shunt until July of 2020. However, now its more difficult as we are now in a Pandemic. Colbie would undo other surgeries not related to his shunt until July 8, 2020. Colbie had began to regress and his head was at 58 cm on a 16 lbs body. This time I had requested Colbie have antibiotics prior to surgery and a day after surgery. Although not statistically proven to help, his Neurosurgeon agreed. Colbie would stay four days this time for the 2nd Shunt, which was now placed directly into the cyst as the cyst is constantly making CSF. As of this moment Colbie is globally delayed and does not crawl, walk, talk, or eat on his own. He can roll all over and is now gradually sitting up alone for about 1-2 minutes. He does have a wheelchair, Gait Trainer. leg braces, glasses and a bath chair for his use. He is not out of the woods with his brain. Due to the unique structure of his brain, and that his brain is still collapsed in on itself, he has fluid on the outside of his brain along with inside of his brain. We are seeking a second opinion for options with Boston's Children's Hospital. Although his team is amazing, the problem is how to get the outside fluid out without compromising a further brain collapse. We are in weekly therapy for OT, PT, Speech and Feeding. He does get Vision therapy, OT and PT with the State of Utah Early learning intervention monthly. On top of his brain malformation, he also has Hip Dysplasia, Epilepsy, Hypotonia, Cerebral Palsy, Colbie has been recently diagnosed with Septo Optic Dysplasia. This has to do with vision and hormones. We already know he has damaged Optic Nerves, and we will be now seeing an Endocrinologist. On top of his therapy we have numerous Doctors that he sees regularly which include Neurosurgeon, Neurologist, Ophthalmologist, Physiotherapist, Orthopedics, Gastroenterologist, Genetics and now recently adding Cardiologist and Endocrinologist. We also found that his Cortisol and Calcium are high this the Endo.

We have been hit very hard financially in all of Colbie's life. We have only been hospital free since March of 2021. We are anticipating surgery to repair his hips sometime the end of this year. I have not been able to work and contribute to my family and the financial burden is placed on my husband alone. We have been struggling to just get a float. It is hard to ask for help and reach out to strangers . In all honestly just asking alone is a hard task. We are on the road to recovery and rehabilitation with Colbie. He does require 24/7 care and I his momma am his caregiver. He does require being carried everywhere as he is immobile, he does require to be hand feed as he cannot feed himself. He does not talk and we must try and figure out how he is feeling and doing daily.

Our family humbly ask for your help, any amount is greatly appreciated and will help us. If you cannot donate please share as much as you can. The only way these crowd funding works is my sharing all across all platforms. Without you're help, kindness, generosity and sharing our story we cannot gain the help our family desperately needs. I have made jewelry, stickers and have thought of every avenue to help ourselves but it has not been enough. I have a FB and Instagram page that I share all things Colbie hoping to find another family with AVID Syndrome. I have found one in Utah and unfortunately the other 2 children did not live past birth in 2020 and in 2021. I have reached across many groups and have yet to find another family.

Please see updates as I have uploaded photos of Colbie and of what his brain looks like currently. You will see that the left side is missing and his brain as a whole is missing roughly 25-40%. What will this all mean for Colbie is still unwritten, only he will write that story and we along for his adventures.

Please visit our page on FB, and Instagram and share Colbie's strength and fight for his life. We humbly ask for your kindness and help.