Lymphatic Malformation Awareness

Meet Gavin! 

#littlestwarriorwednesday where we #spreadawareness

Gavin has Lymphatic Malformation of the face/neck area. It’s basically formation of cysts and with his case he has cysts in his neck, around his trachea, in his tongue, cheeks, and lips. He doesn’t swallow very well so he has a g-tube for feedings. He breathes on his own but has a tracheostomy for security of his airway. 

He went through sclerotherapy from 5 days old till about 2 months old. He has been to the OR 12 times since April.

The only symptoms he has from the malformation are physical deformity of the neck/chin and cheeks. Since his surgery healing has been a challenge due to the Lymphatic Malformation.

Because he has micro cysts within his cheeks, lips, and tongue he will need to be on a medication called Sirolimus for a long period of time. That med targets the micro cysts. It’s a chemo med. and weakens the immune system.

Gavin LOVES his Daddy’s voice and hugs! He also loves when I sing to him and hold him. He always has to hold something in his hand while awake or asleep. You can follow this sweet boy’s journey here @gavinsmedicaladventure

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