Our Warrior Fighting The Good Fight

Everyone has heard the saying “It takes a village to raise a baby”. This phrase has never been more fitting than in this situation. I am lucky enough to be Nana to 3 amazing grandsons. One of these grandsons, Gabriel Nicholas Burns, is a unique little blessing with a rare overgrowth disorder named Beckwith-Wiedemann Syndrome. This rare disorder accounts for a tiny .007% of the population. He was born prematurely to parents Jenna and Nick on October 7, 2015. After birth Gabriel was stabilized and immediately transferred to the
Newborn Intensive Care Unit at Cincinnati Children’s. Here Gabriel would complete a 50 day stay during which he overcame many hurdles including an open abdominal surgery at day 12 of life followed by feeding issues due to his enlarged tongue. Gabriel was discharged home on Thanksgiving morning to a family that was more than ready to have him home. This success however was short lived when after 20 days at home Gabriel had to unexpectedly return to the hospital for a second surgery. This surgery was to correct bi-lateral inguinal hernias. This surgical procedure is rather routine and complications rarely arise. This though was not the case for Gabriel. In his case after the breathing tube was removed his enlarged tongue fell back closing off his airway making him unable to breath. Even with a quick response from the operating room team this continued until his heart rate and oxygen levels were low enough that they performed CPR and put a new breathing tube in. Gabriel was a fighter and later that evening had the breathing tube removed once again and was able to go home after a short stay in the Intensive Care Unit. Now six months later Gabriel has become an exceptional little warrior that is up for any challenge. That being said, there is one challenge Gabriel still battles daily. This challenge is also the common denominator and the reason for the
problematic outcomes listed in the stories above.


As cute as it is and as much as we love him just the way he is, the common denominator and cause of the issues above is his enlarged tongue which is medically termed Macroglossia. Gabriel now has daily struggles to eat enough calories for a little boy with an overgrowth disorder. If this wasn’t bad enough his tongue is now pushing his bottom teeth out and lower jaw forward. If not corrected Gabriel will need future surgeries to correct both dental and jaw formation problems. So after consulting with genetic counselors, specialists and members of the Center for Beckwith-Wiedemann Syndrome it has been recommended that Gabriel have a corrective procedure and that it be completed when he is between six and nine months old. This will decrease the likelihood of developmental setbacks that might arise if the procedure is postponed until later in life. So after a more than chaotic first nine months for their family It is now time for Gabriel to have his 3rd and god willing last surgery. This procedure is called a tongue reduction or tongue debulking. In this procedure the surgeon will cut down the sides and across the front of Gabriel’s tongue in the shape of a W. This section will be removed and the remaining tongue will be sewn together thus reducing the size of Gabriel’s tongue. This is a very specialized procedure that very few surgeons in the world have performed let alone can be considered competent in doing so. In the U.S. these surgeons are even harder to find with zero located within driving distance from Cincinnati. This caused Nick and Jenna to look elsewhere and choose Dr Perlyn who is a plastic surgeon who operates at the Center for Beckwith-Wiedemann Syndrome in Miami, Florida.

This finally brings me to the two main reasons I have formed this Gofundme site. This procedure is an absolute must for Gabriel according to many specialists in the field. Nick and Jenna would do anything and everything possible to ensure Gabriel remains healthy and develops as normal as possible. The first reason is that the procedure listed above would mean their family would have to travel to Miami, FL for approximately 10 days and pay for this travel out of pocket. Unfortunately, I am sure travel to Miami is on the high side for pricing. Then comes the main reason!!!!! Read this carefully, the tongue reduction surgery will cost $25,000 to $30,000 and the insurance will cover exactly $0 because it is “OUT OF NETWORK”! This also does not account for hidden fees or unforseen needed care. I just want to make sure everyone understands that that is not a typo the surgery and all the needed medical care has been guesstimated at $25,000 - $30,000 then add in travel expenses and unforeseen costs and the insurance will cover ZERO dollars. They are currently working with a Beckwith-Wiedemann Syndrome coordinator who is trying to help and get the insurance to cover some of the cost for the procedure.


This brings me back to my opening quote of “It takes a village to raise a baby”. As many of you may or may not know the circumstances listed above do not even begin to scratch the surface of the stress, heartache, and fear as well as the joy, love, and many other emotions their family has experienced on this roller coaster ride that began 5/22/15. This date is the day after they found out their baby was going to be a boy and Nick surprised Jenna by proposing. They went from an all-time high to an all-time low when they received the phone call that they needed to hurry in for a level II ultrasound because there were complications with the pregnancy. They have fought tooth and nail since this day to survive. This included getting and keeping Gabriel home and healthy while attempting to provide a shred of normalcy for their other son Julien who is six and, as any six-year-old, didn’t understand the complexity of the situation. While speaking with them about this they wanted to make sure I gave recognition for all the support they had received so far and that they were only able to make it to where they are today because the assistance of friends, families, co-workers or in other words, their “VILLAGE” that supported them along the way. They expressed how unbelievably grateful they were for all the people in their “Village” and how they could never begin to repay them for their support, much less ask this same “Village” for the additional support needed.

SO LET’S SHOW THEM EXACTLY HOW BIG, SUPPORTIVE, AND AMAZING THEIR “VILLAGE” CAN BE!!!

Please forward this Gofundme page on to anyone and everyone you know. This will assist their family in getting Gabriel the needed procedure and associated healthcare as well as raise awareness for Beckwith-Wiedemann Syndrome.

Please give whatever your heart and finances will allow for I know that their family will be forever grateful for your contributions. Lastly, I know I am bias, but rest assured this little miracle baby is worth every penny!

“We are so often caught up in our destination that we forget to appreciate the journey, especially the goodness of the people we meet on the way”.