Hello everyone!
My name is Tim and I am on Steemit on behalf of Team Knox. On Valentine's Day of 2016 my son was born. Right after birth my son was rushed into the NICU, when little did we know we would almost spend the next half year here. Due to complications my son spent the majority of his early life in the NICU. After 44 days we finally got discharged and within 36 hours we were right back to Cook's Children Hospital because he stopped breathing and my fiance had to give him CPR to save his life. This caused us to go back into the NICU for another 2 months. So what was the problem? During our hospital stay in the NICU the hospital ran all sorts of tests to try and find out what was wrong with our sweet baby boy. Every test came up inconclusive. With our hopes running slim we decided to get with a Geneticist and run a Exome Sequencing test, check every gene in his body. With this test our whole life changed. We were given the information that Knox has "Helsmoortel-Van Der Aa Syndrome" or more commonly referred to as ADNP syndrome. The ADNP Gene, or Activity Dependent Neuroprotective Protein Gene is the enzyme that covers your brain. When this gene is mutated in can affect every body system. When we received this information Knox was the 74th kid diagnosed. At this time he is still the youngest age of an ADNP kid diagnosed and now we are over 120! So that was I am here today. I want to raise awareness of ADNP Syndrome and the amazing possibilities of Whole-Genome Sequencing. I plan on creating tutorials and other informational articles on all the different types of experiences that a severely disabled special needs child could go through. Having a special needs child can be extremely tiresome, worrying, defeating, and stressful beyond all. I would love to help new special needs parents and long time special needs parents who sometimes just need some help. Together we can do it! I plan on first article to be on the basics of a feeding tube and how to keep it clean, stay tuned!
Thank you all for taking the time to read my introduction and I look forward to helping who I can! Also a huge shout out and thank you to the people who have supported us and show interest even though they personally do not have a special needs child. Below is a picture of myself and of our sweet baby boy!
For more information you can visit.
www.facebook.com/TeamKnox
www.adnpkids.com