For most children, the world is filled with places to find fun and friendship. Parks and playgrounds ring with the sound of laughter and joy. Unless you’re a little girl with LM, lymphatic malformation. Then those places become sad, sometimes even scary. The joyful sounds stop, all eyes turn to you and you brace yourself for the points and stares you know are coming your way.
Our daughter, Mackay is that little girl. Her medical condition is most easily explained as a tangled up lymph system. Because her body does not have the proper pathways cirulating from her lymph nodes, the lymph fluid backs up, swelling her face and throat with millions of cysts embedded in the tissues. While her facial deformity is the most visible symptom of LM, the cysts inside her throat are the most life-threatening. Her airway is mainly swollen shut, so Mackay breathes through a trach and gets most of her nutrition through a feeding tube in her stomach.
Because of her medical needs, Mackay shares her bedroom with a nurse, who is there to administer her tube feeding and medications overnight and monitor her breathing, so mom and dad can sleep.
Despite her physical challenges, Mackay’spirit soars. She is a very outgoing and happy child, eager to overcome obstacles in order to make friends. For her to have a “special space” all her own where she feels safe and surrounded by all the things she loves means so much, for our whole family. Mackay’s differences will always be a source of difficulty in her life, but through Special Spaces, her difficulties have resulted in a dream!