Well after four long months of wondering what is causing so many different health issues for Koda we finally have an answer. We had the microarray and Karyotype test ran and everything came back negative we also had certain other specific genetic test ran and the two came back negative finally we pushed and pushed and got the whole Exome sequencing genetic test ran which is a newer test just within the past few years has became available to families. We got the diagnosis for lateral meningocele syndrome this past Friday. This would explain all of his past present and future health issues to come. This syndrome includes feeding issues heart defects brain malformations hydrocephalus partial hearing loss high pallet Low muscle tone and ( meningoceles )pockets of fluid being placed around his spinal cord that could require spinal surgery in the future PDA heart defect that didn’t close and needed a coil to surgically close kidney issues reflux as well as needing brain decompressions and cerebral spinal fluid shunts in the future. The prognosis for this diagnosis is that he should be able to live a long happy life. this syndrome is not associated with any mental delays and although he will most likely lag behind in motor skill development he will be able to learn how to crawl sit stand and walk... it will most likely just take him a little bit longer to get the hang of things. We have gotten in contact with 3 other families that have the same diagnosis, two in the United States and one in Italy two in the United States and one in Italy. There are less than 20 reported and documented cases of this syndrome in the entire world that is how rare this is which would explain why no one seem to be able to figure out what was going on with little man. Together we are working on awareness and hoping to help other families that are in similar situations and spread the word about this extremely rare syndrome! We will stick together, learn together, and lean on each other when need be. This genetic syndrome is not something that is passed from generation to generation but a mutation that happens in utero that is “new in baby” as the geneticist put it. Koda also carries a gene called SCN9A; This is known for causing Dravet Syndrome. This syndrome is known for epilepsy seizures and severe pain- he carries the gene for this but has not been 100% diagnosed with this along with the lateral meningocele syndrome we have to keep a close eye on Koda and have frequent EEGs done over time to monitor his electrical activity in his brain. We are hoping and praying that he does not have Dravet syndrome (which is a much more severe diagnosis) and the geneticist assured us today that because Drew and I do not have a strong family history for seizures or epilepsy that lowers the chance but the possibility is still present because he carries the gene. He also has been diagnosed with Robin Pierre syndrome with consists of having a smaller recessed lower jaw making feeding and breathing much more difficult for him. Koda had a G tube placed to be sure that he gets the adequate nutrition he needs to grow and stay healthy as we continue to work on oral feeds with him but are struggling to make strides. This is going to be a long road for Koda Drew & I but we are going to stay strong and trust in god.
We just want to take a moment to say thank you to everyone that has offered their support kind words and everything in between. Our family appreciates this so much more than we are able to put into words this has been a very trying chapter of all of our lives and we want you to know that each and everyone of you has made such an impact and such a difference for us through an unimaginable life experience. Koda will continue to go to speech therapy occupational therapy physical therapy and lots of follow-up appointments with specialist over the next few years- Koda is such a fighter and has already persevered through so much we are so proud of him and the strong little man that he is. We know that he is going to come out on top of his diagnosis and he won’t go down without a fight! He has came such a long was and will continue to take steps big and small everyday! God is good!
#TeamKoda #LMS #RobinPierreSyndrome
Koda James Kramer was born at 10:36am Saturday, 9/23. He was 8lbs 15oz and 22 inches long. Tayler experienced a very difficult, long labor and delivery lasting 26 hours. Koda was immediately transported to Akron Children's hospital with Drew and Tayler joined them the following day. Drew has had to return to work, taking days off unpaid using FMLA due to complications with Koda.
After 40 days in the NICU, Koda has finally been diagnosed with a large Patent Ductus Arteriosus (PDA). He will be going in for surgery on Monday 11/6. Once we get through this process, the team at Akron Children's can see if that was the root of all his problems! The Cardiologist was luckily in the room when doing the echo and caught the PDA.
These donations will help first time parents, Tayler and Drew, with the growing medical expenses and care for Koda. A financial nightmare for any family with unexpected health concerns of this nature. Any donation is so greatly appreciated ... even $1, $5, etc.
Please share with your family and friends. We have a hefty goal, but Tayler, Drew and Koda are loved by so many ... we know we can reach it!
Thank you for your help in advance!!
Prayers for Baby Koda!
- Paul & Megan Schwartz
- Matthew Schemrich
- Robin Duffield
- Lisa Fawcett
- Sarah Crichlow
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