These are some questions I get a lot regarding our circumstances with Gideon. If you ever have any questions, please don’t hesitate to ask. You won’t offend or upset me. I love talking about my son, my family, my marriage.. I’m pretty transparent in all areas of my life.
1) What is Peroxisomal Biogenesis Disorder?
It’s a terminal genetic disorder. Basically every cell in the body has peroxisomes. They have a specific job- to oxidize long chain fatty acids. Gideon’s peroxisomes don’t do their job efficiently- causing developmental delay. It’s left him blind and severely deaf. All you science junkies- click Here to read more.
2) How long will he live?
2-20 years is what we were told once he made it to a year. (Although when he was originally diagnosed we were told he wouldn’t live to see his 1st birthday.) Doctors really can’t say an exact amount of years because it affects each kid so differently.
3) How much can he see and hear?
He has severe hearing loss in both ears. He hears low tones best- probably the reason why he loves his daddy’s voice. As far as they know right now, Gideon is legally blind with light perception. Meaning the only thing he looks towards is the light.
4) Do the hearing aids help?
Yes. But he hates them. Imagine your first year not hearing much. And then all of a sudden everything is amplified. (We’d probably hate them too.) I have not seen a huge improvement yet but you can tell he’s listening while they’re in…at least for the first 5 minutes. Then he rips them out.
5) Does he sleep through the night yet?
Sometimes. When the Grandmas occasionally stay overnight they say they can ear him talking between 2-4 am. Honestly I’m not sure how frequently he wakes up anymore. Back I’m December Kevin and I made the decision to shut the door and turn the monitor off. It was a decision that was necessary for my ability to function and to be a sane mom. Gideon does not have seizures so we’re not worried about him during the night. We’ve designated night time as his time with The Lord.
6) Will he ever walk?
I think so. Some kids with PBD start crawling around age 2 and walking around age 3. But because of osteoporosis and the digression of the disease, he may need a chair someday.
7) Is there any way to cure his disorder?
No. Every cell in his body (from head to toe) is affected. Currently no cure or treatment exists. Although thanks to the GFPD, research is now being done.
8) How does Laynie handle all this?
She’s the best and because she doesn’t know any different, she treats him so sweetly. Just like any other big sister would…but better. 🙂 She knows that someday he’ll go home to be with Jesus before we all do.
9) How are you and Kevin?
We are doing great given our circumstances. We live for today. We’re not in denial about what the future holds…but because we know Who holds the future, we don’t dwell there. I believe because we both have a relationship with Jesus Christ, Gideon’s disease has brought us closer together instead of ripping us apart.
10) Will you have more kids?
I don’t know. Kevin and I have a 25% chance of having another child with PBD with every birth. We are not actively trying to have a baby, but we realize we are not truly in control of that. (No matter how much we’d like to “think” we are.)
If you have any questions at all please feel free to leave them in the comment box below. I’d love to answer them as best I can!!