I have had this blog page for over a year now, but yet I have not written one single blog. Why? Well, part of it has to do with the fact that I have literally drowned myself in around the clock ADNP syndrome research, in managing our worldwide Facebook parent support page, trying to start a foundation, obsessively collecting data and making spreadsheets and stalking every specialist that I could find who has anything to do with ADNP. I have caffeinated myself so I could stay up late and Skype European families who can’t read English and talking to the researchers in Belgium and Israel. I have been doing all of this in hope to get good and useful information that would give newly diagnosed families the answers that we did not get when our son was diagnosed close to 2 years ago... All we received then was a laboratory test result and one single printed publication that made absolutely no sense and didn’t describe our child and his complicated medical conditions at all. We were basically told, “sorry but this is all we could find” from one of the country’s best genetic research universities (Duke University). So if this reaches any ADNP family and makes them better understand that they are not alone or gives them some comfort, some relief, and some useful information, then I am one happy brand new Mommy blogger!
So now I am going to write my first official ADNP Mommy blog! And let me tell you why. Because I am like a proud parent; super excited to share my news!
This month something amazing happened! We reached the big “50”! Our “Over the Hill” moment if you will. We are actually a little over that hill, we are 51! 51 what? 51 ADNP CHILDREN!
Last week I finally put together a spreadsheet with photos of the ADNP children of the families on my Facebook parent support group. When it was finished I felt like I was a proud parent looking at a collection of photos of their kids. I have come to know each one of these little cuties. No, I have not met them, but I have corresponded with their parents (A LOT) for the last year, asked what probably would totals tens of thousands of questions about their children, and found out all that I could about each and every one these 51 children. I have collected data, photos and stories. I have made discoveries that scientists and researchers didn’t even know about. Very significant and important things. All because of these 51 children! These amazing and beautiful 51 kids!
I feel so blessed to know all of my new families, all of my new children! They are all little ADNP Superhero’s! They don’t even know it but they are helping to shape the discovery and description of this new syndrome. They are helping researchers learn and hopefully one day find treatments for these children, and maybe even one day find a cure. Some of them, like my son Tony, have even provided these researchers with their skin cells and blood samples so that they can grow their cells and study them in a way that they could never do before. They are helping all future ADNP kids; these little 51 superhero’s and my adorable Superman (aka-Tony).
This week I have spent a lot of time thinking about all that we have been through with our little guy Tony. We started with a healthy baby (two actually, he is a twin). However, that quickly turned into a clueless and very scary experience of hospitals, specialists, surgeries, tests, scans, and therapies. Now we are in the same situation. We have a diagnosis and of a brand new syndrome and little is known so we are clueless once again. But this time, right now, I am not so scared. Because of Tony and the rest of these children. They are going to be responsible for all of the research, discoveries and information that doctors in the future will use so that newly diagnosed families won’t be left holding a lab result, scratching their head with no answers. Hopefully it won’t be as scary for those families, because being scared for your child and not having answers just outright sucks!
This photo below is important! These children are important! Right now, at this very moment, information about these children, provided by their wonderful parents are being used by world renowned scientists and genetic researchers who are currently writing up a handful of new publications that are going to be extremely important for ADNP children. So who got the ball rolling, these kids! These ADNP Superhero’s!
So for today, looking at this spreadsheet, I feel like a proud parent. I am a proud parent (Tony). I don’t think there could be a better way to start my Mommy blog than to write my first blog about “all my children”! All 51 of them!
*Their faces are covered for privacy, but this is what 51 children look like! Pretty amazing!
By the date of posting this, we now have 53 children in our group!
My name is Sandra (aka Mother ADNP) I am Mommy to Tony, Rocco and Sophia... and Daddy (Rich)
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This information guide is not a substitute for personal diagnosis. Viewers should consult a medically qualified clinician in all matters relating to genetic diagnosis, management and health. Information on ADNP changes is a very fast-moving field and while the information in this guide is believed to be the best available at the time of publication, some facts may later be updated or change.