Yesterday we got some bad news from Peyton's pediatrician. She told us that Peyton has MCADD (Medium Chain Acyl-CoA Dehydrogenase Deficiency). It is an inherited fatty acid oxidation disorder which means that Peyton cannot breakdown fats for energy. Once her body uses up its primary source of energy the body begins to fail because it cannot make energy from fats. Therfore she must eat every 2 hours day and night because people with MCAD cannot go long without food. Symptoms include: episodes of hypoglycemia, lack of energy, vomiting or seizures. These symptoms can progress very quickly to coma, cardiac arrest, brain damage, or even death in children who are not eating well. MCADD is inherited in a autosomal recessive manner. Which means she inherited two non-working copies of the gene one from each parent (we are so sorry little girl). They have her on medication right now and we are meeting with Genetic Specialists on Friday the 25th. Please keep her in your prayers.
13 comments:
Oh that just makes me want to cry. I am so sorry Michelle. I will for sure keep Peyton, and you and Ben, in my prayers. I hope all goes well. Is it a curable disease, or will she live with it her whole life? Will all of your children get it, being it's genetic?
Oh no. Poor little girl. You guys are in our thoughts and our prayers. I hope everything turns out Ok.
We will add this new situation to our very long prayers! Hopefully it can be controlled with medication???? She is beautiful and you are so lucky. She will be okay. I know she will!
darn it! we are thinking of you guys!
I haven't checked your blog in a few days and look at what I missed!!! First of all congrats! I must say you are one hard worker to just keep working! I'm so glad you finally got to take her home, I know it must have felt like forever. But when it's time I also felt like I still wasn't ready! AND finally I'm so sorry about your bad news. It's hard living in these imperfect bodies, but you and Ben are just the right parents for that little girl. I hope they find something to make her life easier and less stressful for you. I hope you're having fun loving that cute little baby. She is so darn adorable!!!
So sorry to hear your bad news. You all will be in our prayers. We also hope you can get some help/answers on Friday.
Oh, Michelle, my heart just aches for you. I am praying that you get some positive and uplifting news from the specialist on Friday. Until then, we will be praying for sweet baby Peyton.
she is sooo cute, and TINY!!!!
good luck with everything. it's a lot to think about. poor girl. it's going to be fine though!!! i just know it!!
Your little one is so sweet! Ben, you, and your baby girl are in my prayers.
She is so precious and tiny! Congrats on such sweet, beautiful baby, I'm so sorry that it has been kind of traumatic. I will pray for you both. Good luck.
so sorry, Michelle. My thoughts and prayers are with you and sweet Peyton.
I am sooo sooo happy for you guys that you have been so blessed to have another beautiful baby girl!
YOu are in our prayers!
We have been thinking about you guys so much since we read this last post. I mean, what are the chances that she would have inherited that one recessive gene from both of you? We hope that everything will be okay. She looks so sweet and is just beautiful! What a little angel. Take one day at a time. That is all you can do. We wish only the best for little Peyton.
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