KBG Foundation in honor of Emilee Hunter
Donation protected
If you don't know us or our daughter’s story, we are Darin & Mary Hunter, and our daughter, Emilee has KBG. Below is the social media post I wrote after discovering Emilee’s diagnosis. The post took me several months to compose and looking back exactly one year later, I know it was all because of finding acceptance. Finding acceptance in what we could not change for our daughter. As parents, we’re supposed to protect and fix—that’s our job as Mommy’s and Daddy’s, right?
Imagine an unfamiliar person looking you in the eye and telling you there is nothing you can do to change or fix something genetically wrong with your child. I felt useless and like a total failure at the one job I had been dreaming about the majority of my life.
Coming out to our friends and family and openly admitting that one of our worst fears had come to fruition was one of the most humbling experiences we’ve gone through. We QUICKLY learned how fortunate we truly are. Once you become a part of the Special Needs family, your eyes start to witness true blessings and the saying "it could always be worse" becomes a truth and the center of your world.
In this short time we’ve been lucky enough to meet many other members of this small KBG community and family. The support group is filled with some serious super hero Mommy’s and Daddy’s! They have been a lifeline to Darin and I and have offered us so much support, advice and countless resources that we will forever be grateful for. Which brings me to why we started this Go Fund Me page.
First, and most importantly, this page is to raise AWARENESS. At this moment, less than 600 people have been diagnosed with KBG worldwide. This does not mean that there aren’t more living with this syndrome. In order to get diagnosed with KBG, you need a Chromosomal genetic test as KBG Syndrome is caused by a mutation in the ANKRD11 gene (16th chromosome). This is not always offered and does not always get approved by insurance... which often leads to doctors misdiagnosing children as something else.
Second, ALL money donated to this Go Fund Me will be given to families within our KBG community. After being diagnosed with KBG, you are given a list of specialists to see (12 to be exact) which include Audiologist, Cardiologist, Endocrinologist, Epileptologist, Gastroenterologist, Neurologist, Pulmonologist. Common symptoms for our kids are facial dysmorphism, sternum abnormalities, delayed bone age, congenital heart defects, hearing loss, and abnormal EEG with seizures, just to name a few.
Darin and I are extremely blessed and fortunate that we have the resources to support our daughter, but so many people in our KBG community are not as fortunate. There are parents in our group doing their very best each and every day who try and provide things like therapy and medical care for their KBG kiddos and it’s a struggle. The misconception we had in our head of "not being able to fix or do anything about this" was completely blinded and untrue. There is a lot WE CAN DO.
With every dime given to this page, it is our promise and our mission to give it back to those living with KBG who truly need it. We want to document how this financial support can impact and assist the people in our KBG community, and we want you along for the ride. Every time a bill is paid or a child receives what they need, there will be an update. We want everyone to see how their support can impact so many because we truly believe that the joy you feel while watching your donation change someones life is contagious. And if you cannot donate financially to our cause, we simply ask that you inform yourself on what KBG is and how you can inform others.
Thank you for taking the time to read this and thank you to our friends and family who continue to support Emilee everyday of her life. Our daughter and her diagnosis has truly changed our family and reminds us constantly how blessed we are and the importance of being thankful for the little things in life.
With love,
Darin & Mary
June 19, 2019-
Here it is.. here’s the post that I have written, deleted, rewrote and changed a million times because finding not just words, but the RIGHT words is so incredibly hard. On February 26th of this year we got the call and was given our daughters diagnosis that we have been searching for for what seems like years. Our sweet little Emilee Ann, our peanut, has been diagnosed with an extremely rare genetic syndrome called KBG, along with one more called NEDDFL. Both of these of which my husband and I are not carriers of. When we got the diagnosis, they told us less then 300 people world wide have been diagnosed... meaning there was a better chance of us winning the Powerball then Emilee having this gene mutation and us not being carriers (hints why I call her my Powerball). No words would come close to expressing how I felt that day, or even a month after. Anger at the doctors, anger at myself, even some anger at my husband for absolutely no reason. There were zero tears left. All I could do was stare at her and think what in the hell just happened? Her geneticist recommending us joining a support group on Facebook. I would be lying if I didn’t say that I went through each and every single post and picture of the kids and families on there. I compared and contrasted till 4 am every. single. night. And reassured myself that they had it wrong. With every article read, the truth became clearer and the acceptance slowly started to set in. With the help of some truly amazing friends we have in our circle, our overly supportive family, LOTS of prayers and talking with God and mainly the support, love and assurance from my husband that said he would do anything and literally everything in his power to assure our daughter the best life possible, I stopped feeling sorry. It will be a hard, bumpy road with lots of adjusting and patience, but we will gratefully hug and tuck both of our girls into bed each night and watch them grow old. We have 12 recommended specialist! So far we’ve seen the ENT, Cardiologist, Neurologist, Endocrinologist, Allergist, GI, aerodigestive GI and Geneticist with a few more we need to check out in the future! As of Today, Emilee has been put to sleep 3 times for CT scans, MRI and surgery for her ears (1/3 of these kiddos lose their hearing). We do therapy 6 times a week for speech, OT and PT! ENT visits once a month to hopefully preserve her hearing! Diary free diet to help with GI issues. Tons of blood work to see future issues and has been on medicine to help with ear glue, allergies, GI issues and appetite increasers. And mainly, lots and lots of love from her family to assure her that she is loved unconditionally. This syndrome might have turned our world upside down, but it has taught Nola, my husband and I a new level of patience, a grasp of what’s truly important in life and mainly a form of love that I really never understood existed. Thanks to everyone who’s checked in with us, texted me with kind words of assurance, dropped off necklaces and gifts for Emilee, cards with sweet words and my favorite candy - to say we appreciate it is completely an understatement. Thanks to our friends - Seriously! I don’t even want to think about life without you all. The amount of my tears left on your shoulders have probably ruined some of your shirts! To Emi and to us, you are family and we love you. Our family - standing by us and visiting at the hospital, after surgeries, calling after each and every doctor visit, babysitting the girls to give us nights off and even a seriously needed week vacation away from reality for my husband and I to focus on our marriage again. You guys are our rock. THANK YOU! But mainly my husband. You helped me crawl out of what I could only describe as a dark, black hole. You remind me each day that it’s still ok to grieve and cry but always know I’m not doing this alone! The hours you put in at work, the emails and phone call to insurance companies and doctor offices, the appointments you take off for to make sure I don’t go alone... you are my version of a superhero. You have morphed into this super dad and husband and have changed from the inside out. This, my love, has been a blessing in the craziest aspects of our marriage. I am so proud of you and appreciate each and every thing you do for all of your girls! You brighten our day without even knowing it. #KBG #KBGawarenessmonth #NEDDFL #everylinkmatters #powerball
http://www.kbgfoundation.com/
Imagine an unfamiliar person looking you in the eye and telling you there is nothing you can do to change or fix something genetically wrong with your child. I felt useless and like a total failure at the one job I had been dreaming about the majority of my life.
Coming out to our friends and family and openly admitting that one of our worst fears had come to fruition was one of the most humbling experiences we’ve gone through. We QUICKLY learned how fortunate we truly are. Once you become a part of the Special Needs family, your eyes start to witness true blessings and the saying "it could always be worse" becomes a truth and the center of your world.
In this short time we’ve been lucky enough to meet many other members of this small KBG community and family. The support group is filled with some serious super hero Mommy’s and Daddy’s! They have been a lifeline to Darin and I and have offered us so much support, advice and countless resources that we will forever be grateful for. Which brings me to why we started this Go Fund Me page.
First, and most importantly, this page is to raise AWARENESS. At this moment, less than 600 people have been diagnosed with KBG worldwide. This does not mean that there aren’t more living with this syndrome. In order to get diagnosed with KBG, you need a Chromosomal genetic test as KBG Syndrome is caused by a mutation in the ANKRD11 gene (16th chromosome). This is not always offered and does not always get approved by insurance... which often leads to doctors misdiagnosing children as something else.
Second, ALL money donated to this Go Fund Me will be given to families within our KBG community. After being diagnosed with KBG, you are given a list of specialists to see (12 to be exact) which include Audiologist, Cardiologist, Endocrinologist, Epileptologist, Gastroenterologist, Neurologist, Pulmonologist. Common symptoms for our kids are facial dysmorphism, sternum abnormalities, delayed bone age, congenital heart defects, hearing loss, and abnormal EEG with seizures, just to name a few.
Darin and I are extremely blessed and fortunate that we have the resources to support our daughter, but so many people in our KBG community are not as fortunate. There are parents in our group doing their very best each and every day who try and provide things like therapy and medical care for their KBG kiddos and it’s a struggle. The misconception we had in our head of "not being able to fix or do anything about this" was completely blinded and untrue. There is a lot WE CAN DO.
With every dime given to this page, it is our promise and our mission to give it back to those living with KBG who truly need it. We want to document how this financial support can impact and assist the people in our KBG community, and we want you along for the ride. Every time a bill is paid or a child receives what they need, there will be an update. We want everyone to see how their support can impact so many because we truly believe that the joy you feel while watching your donation change someones life is contagious. And if you cannot donate financially to our cause, we simply ask that you inform yourself on what KBG is and how you can inform others.
Thank you for taking the time to read this and thank you to our friends and family who continue to support Emilee everyday of her life. Our daughter and her diagnosis has truly changed our family and reminds us constantly how blessed we are and the importance of being thankful for the little things in life.
With love,
Darin & Mary
June 19, 2019-
Here it is.. here’s the post that I have written, deleted, rewrote and changed a million times because finding not just words, but the RIGHT words is so incredibly hard. On February 26th of this year we got the call and was given our daughters diagnosis that we have been searching for for what seems like years. Our sweet little Emilee Ann, our peanut, has been diagnosed with an extremely rare genetic syndrome called KBG, along with one more called NEDDFL. Both of these of which my husband and I are not carriers of. When we got the diagnosis, they told us less then 300 people world wide have been diagnosed... meaning there was a better chance of us winning the Powerball then Emilee having this gene mutation and us not being carriers (hints why I call her my Powerball). No words would come close to expressing how I felt that day, or even a month after. Anger at the doctors, anger at myself, even some anger at my husband for absolutely no reason. There were zero tears left. All I could do was stare at her and think what in the hell just happened? Her geneticist recommending us joining a support group on Facebook. I would be lying if I didn’t say that I went through each and every single post and picture of the kids and families on there. I compared and contrasted till 4 am every. single. night. And reassured myself that they had it wrong. With every article read, the truth became clearer and the acceptance slowly started to set in. With the help of some truly amazing friends we have in our circle, our overly supportive family, LOTS of prayers and talking with God and mainly the support, love and assurance from my husband that said he would do anything and literally everything in his power to assure our daughter the best life possible, I stopped feeling sorry. It will be a hard, bumpy road with lots of adjusting and patience, but we will gratefully hug and tuck both of our girls into bed each night and watch them grow old. We have 12 recommended specialist! So far we’ve seen the ENT, Cardiologist, Neurologist, Endocrinologist, Allergist, GI, aerodigestive GI and Geneticist with a few more we need to check out in the future! As of Today, Emilee has been put to sleep 3 times for CT scans, MRI and surgery for her ears (1/3 of these kiddos lose their hearing). We do therapy 6 times a week for speech, OT and PT! ENT visits once a month to hopefully preserve her hearing! Diary free diet to help with GI issues. Tons of blood work to see future issues and has been on medicine to help with ear glue, allergies, GI issues and appetite increasers. And mainly, lots and lots of love from her family to assure her that she is loved unconditionally. This syndrome might have turned our world upside down, but it has taught Nola, my husband and I a new level of patience, a grasp of what’s truly important in life and mainly a form of love that I really never understood existed. Thanks to everyone who’s checked in with us, texted me with kind words of assurance, dropped off necklaces and gifts for Emilee, cards with sweet words and my favorite candy - to say we appreciate it is completely an understatement. Thanks to our friends - Seriously! I don’t even want to think about life without you all. The amount of my tears left on your shoulders have probably ruined some of your shirts! To Emi and to us, you are family and we love you. Our family - standing by us and visiting at the hospital, after surgeries, calling after each and every doctor visit, babysitting the girls to give us nights off and even a seriously needed week vacation away from reality for my husband and I to focus on our marriage again. You guys are our rock. THANK YOU! But mainly my husband. You helped me crawl out of what I could only describe as a dark, black hole. You remind me each day that it’s still ok to grieve and cry but always know I’m not doing this alone! The hours you put in at work, the emails and phone call to insurance companies and doctor offices, the appointments you take off for to make sure I don’t go alone... you are my version of a superhero. You have morphed into this super dad and husband and have changed from the inside out. This, my love, has been a blessing in the craziest aspects of our marriage. I am so proud of you and appreciate each and every thing you do for all of your girls! You brighten our day without even knowing it. #KBG #KBGawarenessmonth #NEDDFL #everylinkmatters #powerball
http://www.kbgfoundation.com/
Organiser and beneficiary
Mary Hunter
Organiser
Woodstock, GA
Darin Hunter
Beneficiary