Anyway, enough about my crappy mood this morning. I already feel better now that I've vented on my bloggy blog. Not much has really been going on in my life since I last wrote. I've been lazy and swamped with school work so I haven't really had much time to write about anything interesting. Not that it really matters, I only have like 2 followers on my blog so ha! I need to find a way to make this shit go viral. Ha, only kidding. That would mean that I would have to take the time out to actually write about important things on a daily basis to keep people interested in my boring life. My only fun fact for the time being is that I finally will be graduating from college this year. I'm pretty excited about it, I feel like I've been in school forever. I will have a dual Bachelors Degree in Business Management and Logistics and Distribution. I'm taking 4 classes this summer and three in the fall and then I will be done! Of course Sullivan is kind of dumb because they won't let me walk until next Spring but oh well. At least I'll be done and then I can focus on things that I like to do like photography and FUN!
Married life is awesome. I'm trying to think about how I can elaborate on this but I can't. It's. Just. Awesome. Being with your best friend every day of your life is THE BEST THING EVER!
Aside from those things, what I really want to blog about is my friends. I'm sure I've mentioned this before, but I have the greatest group of friends on the planet. Two of my friends, Tiffiny and Fredie Robinson, are going through something right now that no parent should ever have to go through. Their daughter was diagnosed with MLD which stands for Metachromatic Leukodystrophy. I know, I know...most of you (whoever reads this) is like what's that? Well here is the description pulled from the MLD website:
What is Metachromatic Leukodystrophy?
Metachromatic leukodystrophy (MLD) is one of a group of genetic disorders called the leukodystrophies. These diseases impair the growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least 10 different enzymes. The leukodystrophies are caused by genetic defects in how myelin produces or metabolizes these enzymes. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the enzymes. MLD is caused by a deficiency of the enzyme arylsulfatase A. MLD is one of several lipid storage diseases, which result in the toxic buildup of fatty materials (lipids) in cells in the nervous system, liver, and kidneys. There are three forms of MLD: late infantile, juvenile, and adult. Onset of the late infantile form (the most common MLD) is typically between 12 and 20 months following birth. Affected children have difficulty walking after the first year of life. Symptoms include muscle wasting and weakness, muscle rigidity, developmental delays, progressive loss of vision leading to blindness, convulsions, impaired swallowing, paralysis, and dementia. Children may become comatose. Most children with this form of MLD die by age 5. The juvenile form of MLD (between 3-10 years of age) usually begins with impaired school performance, mental deterioration, and dementia and then develop symptoms similar to the infantile form but with slower progression. The adult form commonly begins after age 16 as a psychiatric disorder or progressive dementia. Symptoms include impaired concentration, ataxia, seizures, dementia, and tremor..
Is there any treatment?
There
is no cure for MLD. Bone marrow transplantation may delay progression
of the disease in some cases. Other treatment
is symptomatic and supportive.
Considerable progress has been made with regard to gene therapy in an
animal model of MLD.
What is the prognosis?
The
prognosis for MLD is poor. Most children within the infantile form die
by age 5. Symptoms of the juvenile form progress
with death occurring 10 to 20
years following onset. Those persons affected by the adult form
typically die withing 6 to
14 years following onset of
symptoms.
Sucks right? Your damn right it does. Makenzie is the sweetest little girl and right now she is at Duke University receiving treatment that can hopefully save her life. With all the dumb crap that I bitch about every day, seeing my friends go through something this heartbreaking really puts my problems in their place.
Last Saturday I had a fundraiser photoshoot for Makenzie at McNeely Lake Park and we had a great turnout. We raised $700 for her and put the money into their COTA account. I'm hoping to do another photoshoot in the upcoming months but right now things are a little hectic on the school front. If you would like to donate the link is below. Along with Makenzie's story. Every little bit helps and spreading the word and her story helps too.
Also, Mak loves Justin Bieber. If anyone knows a way to get him to come visit her....let's make that happen!!
Thank you for taking the time to read my blog today. I'll try to blog more often and share more fundraiser info for little Mak. Keep her in your prayers!
xoxo
Mrs. Cecil
