Gavin Silvestri is an energetic, Bluey-loving five-year-old. He has a rare disease called Lymphatic Malformation.
What is Lymphatic Malformation?Lymphatic Malformation is a clump of abnormal lymph vessels that form a growing, disorganized, spongy cluster of cysts. They appear as masses (unusual growths), but they are benign (not cancerous).
Lymphatic Malformations grow because the lymph (fluid) in their abnormal vessels can't drain out well and usually are separate from the normal vessel system. This makes them swell, which is known as a flare.
As an LM grows, it may put pressure on nearby body parts, such as the eyes, trachea (windpipe), or blood vessels. LMs may form inside skin, fat, connective tissue , joints, organs, or bones. They can form anywhere in the body but the brain, and are most common in the head and neck area.
A child with an LM may have the following:
- overgrowth and swelling in affected areas (lips, tongue, jaws, cheeks, arms, legs, fingers, or toes)
- pain and swelling of the LM
- a tendency to injure the LM, causing bleeding, which can happen with very mild trauma or even with no known trauma.
What would you want the world to know about Lymphatic Malformation?
We want the world to know that just because Gavin has a disease that makes him look different doesn’t mean he is any less capable of anything he wishes to do. We wish the world would see Gavin for who he is and not what his disease defines him as.
What does it feel like to live with Lymphatic Malformations?
Living with Gavin’s type of LM means learning, eating, breathing, & communicating in a different way. Gavin spent 7 months in the NICU, so he is developmentally delayed and is also non-verbal. So Gavin uses sign language & a communicative device to communicate.
He uses a g-tube in his belly to eat. His food gets pumped into his belly by a machine. We’re also working with a feeding therapist to help with eating by mouth.
His tracheostomy is there to protect his airway so he can breathe. His airway is very affected by the LM, so without it, breathing would be impossible.
Gavin is in Pre-K and will be starting Kindergarten in August. Learning in the classroom will look different. He has a nurse who goes to school with him and is always by his side. He will have to be assessed differently because he doesn’t communicate verbally.
Sometimes living with LM can be overwhelming because of all the challenges we face. Even simple things like bath time, we must be super careful his tracheostomy doesn’t become submerged in the water. Surgeries, treatments, and endless therapies can feel a little much at times but it’s something we have to do in order for Gavin to be able to live a more normal, quality life.