Cameron’s battle with a rare brain defect

When you’re expecting a baby you naturally envision how life will be. You think about all the big & little exciting things that come along with growing a family. Unfortunately, that excitement isn’t always aligned with your reality.

My name is Katie & I have chosen to use go fund me in support of Ashley Gregory and Trenton Ipock. They recently became the proud parents of an amazing little boy, Cameron Eric Ipock, last month. Ashley also has a 14 year old son, Robert, whom I’ve had the pleasure of helping to raise since 2011. Robert is my step son and through co-parenting, Ashley has become one of my best friends. Their family is going through a great deal right now & could really use our support.

Cameron was diagnosed with a very rare birth defect when Ashley was 20 weeks pregnant. This defect is called an encephalocele. This is a defect of the neural tube and affects the brain. The neural tube is a narrow channel that folds and closes during the third and fourth weeks of pregnancy to form the brain and spinal cord. Encephalocele is a sac-like protrusion or projection of the brain and the membranes that cover it through an opening in the skull. Encephalocele happens when the neural tube does not close completely during pregnancy. The result is an opening anywhere along the center of the skull from the nose to the back of the neck. Cameron’s is on the lower part of his skull right above his neck; called an occipital encephalocele. He also has an even more rare condition attached to this defect called Chiari III malformation which involves herniation of posterior fossa contents, that is, the cerebellum and/or the brainstem, occipital lobe, and fourth ventricle. 

This diagnosis was extremely grim when Cameron was in utero. He was given little chance to live or told that he would have an extremely poor quality of life. Thanks to the amazing team at St. Louis Children’s Hospital, Cameron was delivered June 10th, 2021 and came out crying like a champion but there has already been many obstacles to overcome and many more ahead. Cameron was observed in the NICU for 11 days after birth before being sent home. He uses oxygen daily for sleep apnea; which was first suspected from an infant pulse ox monitor and later confirmed with a sleep study. Shortly after, he had to return to the hospital because he was developing hydrocephalus (a condition in which an accumulation of cerebrospinal fluid occurs within the brain) and he was admitted for surgery to place a shunt (a catheter that carries cerebrospinal fluid from a ventricle in the brain to another area of the body) in his brain. Cameron did extremely well during this surgery and was able to return home 3 days later. Cameron’s shunt is functional but his encephalocele has grown, again. At birth, it was discussed that surgery should be delayed until 6-12 months of life (if possible) but due to the growth and Cameron developing hydrocephalus; they are now preparing for surgery. Cameron has been scheduled for a sedated MRA (magnetic resonance angiography scan that takes very clear, detailed pictures of the blood vessels, including arteries and veins, using a magnetic resonance imaging (MRI) machine.) The MRA is used to detect if surgery can be done safely at this stage in his life. If it is decided that Cameron is in a suitable state, he will undergo an extremely complex brain surgery to remove and repair his encephalocele and the Chiari. This will be his 3rd hospitalization and 2nd surgery in under 2 months.

I can not even begin to understand what they’re are going through right now but I want them to know and feel the village that is here cheering them on every step of the way! Their strength, patience, love, humor and faith are by far incredible! I know first hand how difficult this has been for them; not only emotionally but now financially as well. Basic needs are starting to become challenging to fulfill. The amount of travel time from the Lake of the Ozarks to St. Louis alone adds up so quick. Continued (and now extended) time off work. Meals during travel and hospitalizations. Medical bills. Basics necessities, etc. Ashley was scheduled to return to work on August 13th & because she is self employed, she does not have STD/LTD and could be in jeopardy of losing clientele. Trenton has been mostly working full time hours again but continues to need time off to be there for Cameron. When determining my goal amount; I factored in what it would cost for a family of 4 to live for 1 month and multiplied that by 6 then estimated the costs involved with traveling/unpaid time off; giving me an end goal of $24,000.

If you’ve read this far and are still with me, please know that you’re appreciated! I sincerely thank you for following along. Please keep Cameron and his family lifted in your prayers.

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-Katie