Advocacy for Those Who Cannot speak!

Yesterday, a young child lost his life due to a Mitochondrial Disease. I'm not sure about which specific one. But I know his mother, father, and sister know everything about it. This child is one out of many that have lost their lives due to a Mito/FOD disease. There are many wonderful charities out there that do research/education for childhood/adult conditions. To name a few, Susan G. Komen, Jerry's Kids, St Judes, Children's Miracle Network, etc. But how many of you have heard of Mitochondrial Diseases? Much less a place to facilitate funds as well as education on these types of diseases? There are 2 wonderful websites that I go to quite often for my own education and support with Evangeline's LCHAD (which falls under the Mito "umbrella" so to speak) The first one is a way to get facts and info as well as to be able to donate/be an advocate for these wonderful children who cannot, themselves, speak.

www.umdf.org

The second one is a way for family and friends of children with these disorders/diseases to connect. To share recipes, get support, etc. We are talking practical advice that the Drs don't tell you about. Day to day life living with a Mito/Fatty oxidation disorder.

www.FODsupport.org

These past few weeks I have had it on my heart to start being an advocate for not only my child but for others suffering from these disorders/diseases. We have been blessed beyond belief by being able to get a Nurse in the home for 30 hrs a week. So I now have more time and more energy to focus on finding me. While I do want to get a job, I also want to try and bring people information, clear, information about Mito diseases. The more people that are aware of the severity and the dangers that these particular conditions, the more likely we are to get a cure.

Perhaps if we came together, as a community of 1, we could work together to try and find a cure for not only my sweet Evie Grace, but for all children (and adults as well) living with these diseases.

What is my place in all of this? Starting next week, I am going to try and see if we can't raise awareness here in Shreveport. Denton, Tx had a 5k coming up that was for Mito. Perhaps we can find a way to have a 5k here? I am not sure. Many ideas are in the works, and God is helping me to figure all this out.

So, you may ask, "how can I help?" Firstly, you can pray. Pray for these kids, and their families that are dealing with this day to day. Secondly, if we can get a 5k here in town, get out your best sneakers and start preparing! Thirdly, know that while cancer, muscular dystrophy, cystic fibrosis, etc, are all known about, Mito diseases, while not as rare as you might think, are generally not. So begin talking about it!

There is also another need here in Shreveport. We have so many kids in the hospitals that need our support. Physically, mentally, spiritually. Not all kids are born with parents that are supportive. Some kids are simply left in the hospital for days on end. Other times the parent has other responsibilities and simply cannot stay with the child. Then, there is the need for the kids in the hospitals to feel safe and more at home. Again, you ask, "how can I help?" There are several ways. You can volunteer at Sutton Childrens, here in Shreveport and just do whatever is needed. You can also donate gently used toys or even brand new ones for kids of all ages. Then lastly, you can always pray. Pray for these kids as they are in an unfamiliar, often scary place, sometimes alone.

Thanks for listening and being a part of this chapter in our lives. Hopefully, we, together, can help minister to children and adults in this very practical and much needed way. Thanks again.

Where do I begin?

Hey guys. We just got back from New Orleans from a weeks stay at Children's Hospital. For anyone that may not know LA, this is a 6 hr drive from Shreveport. So it was quite an ordeal. We went in on August 27th to a hospital here in Shreveport, where Evangeline had her G-Tube placed. WE were discharged 5 days later,where she was taking bottles so well, seemingly tolerating her G-tube. The next day, she spiked a temp, her BS was 206, and she was very lethargic. This is odd for an LCHAD child. Usually low BS is an indicator that something is wrong. So I ended up taking her back to the hospital. It was there, that she decided she no longer wanted to eat. At all. She began screaming every time we turned her pump on, and it was even worse bottle feeding. She was then on only D10, because her body could not handle formula. She began retching (she had a nissen done as well.) They transferred us to Children's after a week there.

Children's was somewhat better. She began tolerating some tube feeds, and we are still working on getting her to bottle feed. We have had her evaluated by GI specialists, who suggest to turn her G-Tube into a GJ tube, which I am certainly NOT a fan of. Meaning, they would internally, move her tube from her stomach to directly into her intestines, bypassing the stomach. Meaning she would eat only by tube. They would also give her meds to help with the pain of eating. They, however, can't do this until the G-tube tract has fully formed. Thank God, I don't have to make that decision just yet.

We also had her evaluated by OT and by speech therapy was well, and neither one noticed anything with her sucking/swallowing nor her gross/fine motor skills. Just having some difficulty with tummy time, because of the G-tube still being somewhat sore.

She was also diagnosed with Anemia, so it could be an issue of not having the energy to suck. We have her on Iron Supplements, for the time being, until we get the results of those tests back. We can then know if it is due to lack of nutrition, or other reasons.

Things are looking, up, however. She drank a little less than an ounce today and got 1/2 of her rice cereal from the spoon. She just loves that spoon. Anything can go in her mouth except that stinking bottle. We also received our Extended Care nurse. Things are working really well, so far. It is so wonderful to have someone who understands how to handle her and has experience dealing with special needs kids. Currently, we use her 9a-3p M-F. WE can also change hours up, if we have a special occasion or want to go on a date. It is kind of like having a Nurse for a Nanny. I am having difficulty letting her take over, but I realize that Evie needs to know other people than just her Daddy and Me. She will hopefully get used to Mrs A. pretty quickly. I would love to go back to school to work on getting either Alt. Cert to teach music in public school, or simply finish my Ed degree, only 22 hrs left. Either way, it means me finding me again and having peace in our marriage.