Lucas Drake continues to fight his increasing disabilities by trying to stay as active as possible, and, at the same time, maintaining his postive attitude. While he is able to walk/move around at the present time, it is, however, getting more difficult for him.
Our son, who is eight, has FOP, or fibrodysplasia ossificans progressiva, which is a rare musculoskeletal condition that causes increased bone growth and other problems; he is often in severe pain and has to be careful when he falls ro bumps himself because it can speed up the "bone-building" process. Eventually, his disease will end up killing him, but we try not to think about that just yet. We want Lucas' life to be full of joy and adventure while he is able to get around and do things.
Lucas developed this condition after he fell off a slide while playing. He was just three years ago when it happened. We thought nothing of it, but we took him to the ER, just to make sure he didn't injure himself. Unfortunately, this was when the nightmare started; it continues to get worse.
We may eventually have to get Lucas a power scooter or a wheelchair; those days where it is cold or rainy are the worst for him because the pain/stiffness really makes its presence known. He has severe joint pain; he may have arthritis on top of the FOP, which would only complicate matters. We may have to look into getting a "handicap" sticker for our van, or, at least, have a lift put in, so to make transporting him easier.
We have two other children besides Lucas Drake: two daughters, Larkspur and Kiera, who are ten and thirteen; for some unkonwn reason, they were not affected by FOP. They are as healthy as Lucas is delicate. We thank God for this, but I know having a little brother who has serious special needs must be hard on them both. We would like to have more kids in the future, but what's to say that any future children will have FOP?
It is hard enough dealing with the implications of FOP in our youngest child; I don't think I could handle having another child with this same condition.
If we do decide to have any other children, we may look into foster care or adoption.
Lucas has a good attitude in light of all of the doctor visits/appointments (or hospitalizations or tests) he has to endure. We don't like seeing him getting poked/prodded, but if a cure for his FOP could be found or the progresion of his disease could be stopped, it would be worth it in the end. It would be a dream come true , not only for us, but for Lucas and his sisters.
*to be continued.*