This is Gabriel! He is our 5 year old ray of sunshine. Gabriel was diagnosed with an extremely rare genetic disorder called CLOVES Syndrome. 
The chances of being born with CLOVES is less than 1 in 15,000,000. 

CLOVES syndrome (CS) is a recently described rare disorder characterized by tissue overgrowth and complex vascular anomalies. CLOVES stands for congenital lipomatous (fatty) overgrowth, vascular malformations, epidermal nevi and scoliosis/skeletal/spinal anomalies.
CLOVES syndrome may affects the soft tissue, blood vessels, bone and internal organs. The manifestations are very variable ranging from mild to severe anomalies. These abnormalities are typically present at birth.

Gabriel has already underwent surgery at Duke Children's Hospital twice to amputate an enlarged toe and remove tissue on four other enlarged toes. He is set to have more surgery on his feet; to remove the growth plates in his affected toes.  Removal of the growth plates will keep his toes from lengthening any more, they are already as long/big as his fathers and will continue to grow at a rapid rate unless we intervene.

Toes on both feet, the right foot, right leg, left buttocks and left low back are all showing signs of being affected by this syndrome. Only time will tell if any other body parts are affected, including any vital organs.


Gabriel currently is followed by a Hematologist/Oncologist, Geneticist, Interventional Radiologist, Gastroenterologist, Neurologist, Orthopedist and Nutritionist.
He has bloodwork done monthy to check for tumor markers and organ functionality, along with ultrasounds every 3 months of his abdomen to screen for any tumors in his internal organs and a full body MRI every 6 months.

Gabriel is fed primarily from his G-Tube.  A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow.  Gabriel slowly stopped eating, at 20 months old he was taking in only 100 calories a day and weighed only 17 lbs.
We pushed to get Gabriel a feeding tube, since no doctor could find a reason why Gabriel wouldn't eat and all of his feeding therapists couldn't get anywhere with him.  It was terrifying watching our son waste away in front of us and no one doing anything about it.  Thankfully our Geneticist believed us and pushed to have Gabriel admitted to the hospital and have a feeding tube inserted.

Gabriel's MRI's show extensive  lipomatous overgrowth in his abdomen, paraspinal region and buttocks/hips.  A lipoma is a slow-growing, fatty lump that's most often situated between your skin and the underlying muscle layer. 
In Gabriel's case, all of the fat in his abdomen is affected by these lipomas which are growing at an accelerated rate.  These circumstances make it nearly impossible to have surgical intervention, since there are no clear borders to the tumors, going in and trying to surgically remove them would be extremely dangerous and risky.
Surgery would likely not end well for Gabriel.
The lipomas are taking up nearly all of the space in his abdomen, as a result most of his internal organs are centralized or "squished" together.  The lipomas are also growing in and around his spinal cord and down his hips into his legs.
Our only viable option at this point is to try experimental medication to try and stop the overgrowth of the lipomas.

Gabriel was previously on an experimental medication trial at Boston Children's Hospital called ARQ-092, and on a medication called Sirolimus before that.  After about a year both of the medications failed him.  His body stopped responding to the meds and the tumors started to grow again.  Gabriel would vomit 8-10 times a day, he would wake up multiple times a night vomiting, he could barely keep any food down because the tumors had taken up nearly all of the free space in his abdomen.  They were starving him because he was unable to take in enough calories before he would vomit it all out.
Gabriel is now on a new medication, it is an oral Chemotherapy drug that was designed for use in metastatic breast cancer patients.  It has also been used to treat patients with overgrowth disorders caused by a PIK3CA mutation, which is the mutation that causes CLOVES.

Gabriel has responded amazing to the new meds.  He has been able to come off of his G-tube feeds and eat by mouth normally, which he has never been able to do while maintaining his weight.  We have to travel to Asheville monthly for bloodwork and checkups to make sure his body continues to tolerate the medication and we have begun to travel to Philadelphia to see his CLOVES specialist every few months.




We are not sure where the future is going to take us, but right now we are doing everything possible to give Gabriel the best life and care he can get. 

Any donation, help or prayer is extremely appreciated while we try to navigate this difficult time.

Thank you for taking the time to read this and keeping our precious baby boy in your thoughts!