My (soon to be) 16-year-old son has suffered from congenital lymphangio mytosis since the age of 3 or 4. Now that he is in my care we make daily trips to get his lymphedema treated. The manual lymphatic massage treatments have brought down his left leg approximately 16% in two weeks. But he has both legs and groin area affected, and requires wraps and compression garments that are not covered by Medicaid. So far the cost has been approximately $600 not covered by his insurance. And we have just begun.
He is being measured for garments that are not covered. Day garments costing 600 dollars to night garments costing 2,500 dollars. And with no help. He will have to have compression garments the rest of his life in order to be able to live a semi-normal life. He will be unable to work without them, and his therapist has stated that his lymphedema will turn into elephantiasis without this treatment.
The daily compression garments will need to be replaced every 3 to 6 months. How are we to pay for these? I cannot work as I have to drive him to the Clinics (1 1/2 hours one way) every work day. My husband works for Habitat for Humanity, a non-profit. Not exactly the place to make a fortune. We are getting custody of Rik (the 16-year-old in this story) and his 15-year-old brother. Each has been abused and neglected his whole life. And now to get them all the treatment (physical and mental) and love that they need will be costly, only to find out some of the most expensive treatment is not covered by Medicaid. What, pray tell, are these poor brothers to do?
Maybe the new picture of lymphedema needs to be a young person to make Congress understand that this disease affects more than just the aged, and cancer related. It affects the FUTURE of some of the most important people in the world, our children. My 16-year-old is more than willing and ready to be an advocate for this cause. He has suffered with the debilitating pain of cellulitis and infections of improper treatment his whole life. When will his pain come to an end? When will he get the medical care and garments he so desperately needs to live a full life?
This is just part of his story. And he is willing to tell it, bless his heart. If you think a young fresh face of today’s youth may help in your fight to help get the wraps and garments covered, he is your passionate young man.
