My son, Lucas Drake, is my best friend, my buddy pal, my everything.
If I could take away some of his pain, believe me, I would, in a heartbeat. No father likes to see their child suffer; I know I don't.
Lucas is eight years old. He looks like a typical little boy at first, but when you look at him, you will see that he cannot walk very well and that his body seems "frozen" somehow. It's because he developed a rare disease after a devastating fall when he was three; in just five years he went from a laughing, active child to a child who can barely move without excruciating pain or difficulty.
When most people injure themselves, or more importantly, break a bone, their body's ossification process takes up to six weeks, and then it stops when the bones have healed. In Lucas' case, the process is ongoing; it never stops. It's as if he's growing more bone on top of bone; and his muscles and tendons are affected too. Surgery has been tried, but it didn't work; it only sped up the "ossification", and has, therefore, only caused more problems instead of making things better or easier for Lucas.
Lucas is literally turning into a statue. It's as if he's becoming a child made out of cement.
Lucas can walk, but not for long. He often has to stop, so he can rest. He can't sit down without help, and the same applies to when he has to get back up. Every movement for Lucas is a huge challenge. He can't participate in most activities that require running; if he falls, more bone can form, rendering him into a statue. He has to do "quiet" activities like reading, drawing, playing on the computer, or playing board games with his two older sisters, who dote on him.
Eventually, Lucas will suffocate if enough bone grows on his ribcage or spine, to where his lungs are crowded by bone, or his heart fails because it will have to work twice as hard to pump oxygen into his system. Every day we have with him is precious; we don't know when this (his death) will occur. This makes every moment with him important; we would do anything to help our son, to make his life a little easier.
As you can imagine Lucas is home-schooled by his mother. I work over forty hours a week as a convenience store operator. I have to work as many hours as I can, so we can have the money to pay for Lucas' medical care or pay off his staggering medical costs. It isn't easy, but God somehow provides for our needs and gives us the strength to face this situation with courage and grace.
He could go to school like any other child his age, but that would be too risky. His health is too uncertain; one minute he can be laughing or playing quietly; the next, he could fall, thus, exascerbating the problem (extra bone growth). If he falls, he has to go to the hospital as soon as possible for pain management and to make sure he didn't injure himself all the more. It's a never-ending cycle of pain, discomfort, and tears for all of us.
Besides Lucas, we have two daughters, Larkspur (Lark) (10) and Kiera (13). They are unaffected by DOP; they are both perfectly healthy girls. I am thankful for this, but I hate to see our youngest child go through so much, in relation to his health.
Our dearest wish is for the bone growth to stop, so Lucas can have a more normal life. He is just a little boy; he doesn't deserve to go through something like this! We want a cure to be found in his lifetime, so he can do things other children his age do. Little boys aren't supposed to live with pain, limited movement, or endless doctor's visits; little boys should be running around, making noise, annoying brothers or sisters, or just loving life!
I will write more about Lucas in future stories; you haven't heard the last from us! Until then, take care and pray a cure for fibrodysplasia ossificans progressiva or any other diseases like it is found! God bless and thanks for listening to my story!
~Sincerely, Richard (Ric) Manley Ibbotson, Carlsbad, New Mexico.
