There are exceptionally rare diseases that pose a significant burden not only for patients but also for their families. Yet, stories like Gavin Silvestri’s demonstrate that love and family unity have the power to overcome the most formidable challenges.
At 18 months old, Gavin smiles with a cheeky laugh at fate and his own illness.
Although he has lived for a short period, he has already gone through the toughest battles due to his illness. Gavin suffers from lymphatic malformation of the head, a genetic disease that causes appearance of lumps under the skin.
In Gavin’s case, small, swollen cysts have formed under his face and his jaw is the most affected area.
Parents Victoria and Joseph, from Jacksonville, Florida, were praying that the pregnancy would go normally but during a routine check-up the baby’s illness was revealed to them.
“We were there to try to find out if it was a boy or a girl and measure all of its limbs and heart. The ultrasound technician was doing his scan, everything was fine until the point where he said: ‘let me go find the doctor’», he stated Victory.
The doctor revealed that Gavin would be born with lymphatic malformation, a buildup of abnormal cells in the head that creates a large mass and affects only one in 4,000 children.
Gavin was born in February 2018, at which time doctors and parents were able to see the magnitude of his illness. However, despite the malformation, the parents did not stop feeling happy about the arrival of the child.
“I wasn’t crying, I wasn’t upset, because that was him, that was my baby,” Victoria Silvestri said.
Just four days after his birth, Gavin had to begin a long journey of sclerotherapy, in which injections are used to attack and shrink cysts.
“Your doctor would come in with a needle, drain the cysts, inject medication, insert drains, let the medication sit for 24 hours, and then it drained again,” commented Victoria.
This process lasted five days a week for two months. 
In addition, the baby required a tracheostomy: the insertion of a tube into the trachea so that air could enter his lungs.
The little boy lasted more than 7 hours in the operating room, depending only on a ventilator to breathe.
As if this were not enough, Gavin also suffered loose stitches after the operation and had to undergo surgery again to repair them.
The first seven months of Gavin’s life were spent in the hospital, until he could be discharged. Now the child is at home with his parents, who are educating themselves and learning to live with a child with their child’s condition. They just want to make life easier for the baby.
“Gavin is a special boy because he is the light of our life. He has changed the way we see life completely. He changed our mindset basically about everything; how we live, how we used to do things. We still try to keep it somewhat normal, but I want to say it’s just amazing,” Victoria expressed.
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Usually these cysts are benign and do not pose a threat to the child’s life, unless the lumps interfere with breathing. .
Now his parents have established communication with other families who are going through a similar situation, and are trying to create a network that raises awareness about the disease. «Having a child with a visible difference has made me taught that life is precious,” commented the mother.
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