The Julia & Maya Clark Fund
is a proud supporter of the Global Genes Project,
bringing hope & awareness to all those who suffer
from rare diseases!
Visit
www.globalgenesproject.org
to find out how you can get involved!
Awareness=Funding=Cure!!!!
Email www.juliaandmayaclark.com to all your friends & let them know about mitochondrial disease!
Julia | Maya |
The UMDF Atlanta Chapter hosted a wonderful breakfast with Santa!
TJ Maxx provided toys for the children & donated $1600 to the UMDF!
The Mito Girls!
Blog:
2010, Feb18
The following was a speech I wrote after being asked by the Cobb AAUW to describe what it is like for a parent of children with autism. Normally, I’m a “silver lining” person and like to focus on what my daughters CAN do and what makes them happy. But that is not the entire truth. I realized in rereading this today that I should be proud of my daughters’ adversities & “negative” behaviors as it is every bit a part of them as the smiles & cuddles.
Preparing to speak to you tonight was a task that was both daunting and cathartic. I see my daughters, Julia & Maya, as strong, beautiful, precious, funny and sweet. They have been dealt a very unfair hand in life, one which causes them constant confusion, pain and sorrow. They are troopers beyond what any of us can understand.
Because of this it is difficult for me to stand before you and describe my daughters as monsters. But I have been given the opportunity to explain to my community what life with autism is like on behalf of all the families who live it every day, so for them I must paint an accurate picture in hopes of gaining understanding, acceptance and support.
Julia and Maya were diagnosed with autism at age 2; they were diagnosed with mitochondrial encephalomyopathy at age 4. Mitochondrial disease is a life-threatening metabolic disorder which prevents the body from properly converting food into energy. I am often asked what behaviors stem from mito as opposed to autism. The truth is we don’t know. As I describe a life for my family, keep in mind that autism is a varied disorder, and manifests differently in every affected individual.
Julia and Maya cannot communicate. It is not that they simply cannot speak; they cannot speak, sign, gesture or use a communicative device. If one has a tummy ache, she cannot rub her stomach to let me know that’s where it hurts. They cry inconsolably. We offer everything: food, drink, diaper change, put them in their cribs, take them back out, hold them, don’t hold them, take their socks off, put them back on, turn on the music, turn off the music- you get the idea. Maya holds our record at 7 hours of straight screaming with no rest, food or drink. She has spent 2 weeks in “meltdown mode” where she screams for no apparent reason and then it just stops for no apparent reason, with very little sleep in between.
Ah, the sleep issues. When I say my daughters were awake all night, it is not an exaggeration. They literally will stay awake all night. Sometimes happy, sometimes crying, but always awake. The longest nights we’ve gone 5 hours or more without waking was 2 weeks in a row, which has happened twice in almost 5 years. There is no rhyme or reason for doctors to work with: sometimes they don’t go to sleep until 1am, other times they fall asleep at 10 but wake up after 2 hours, and sometimes it’s simply restlessness. We’ve tried everything from melatonin to valium, and none of it has worked. If you would’ve told me when I was pregnant that I would dose my kids with valium at 3 yrs. old, I would have told you you’re out of your mind. Now I beg the doctors for something stronger.
But by far the worst, most cruel behavior of autism is self-injury. My daughters hit themselves repeatedly, bang their heads against the wall, bite themselves until they draw blood and even then don’t stop. Julia has come home from school covered in bruises from kicking & hitting herself. Maya will scream & bang her head against her crib and bite anything she can get a hold of in a blind rage. Julia has knocked me unconscious with a head-butt to my temple. She punches and kicks me because she cannot tell me what she needs.
My daughters “stim”, which stands for self-stimulatory behavior. Stimming is a repetitive behavior individuals with autism use as an avoidance of their surroundings. Maya visually stims by moving her hands at the sides of her face where her peripheral vision sees. Julia is more of a verbal stimmer, repeating a basic sound like “bwa bwa bwa” for hours on end, very loudly. The older they get, the more difficult it is for me both physically and emotionally to take them out in public. We get stares. We get complaints. We get well-meaning but hurtful comments such as “well, someone’s got the devil in her”. I cringe every time someone asks me how old they are, because I know the confused yet sympathetic look that will follow.
I hate that look, because I am proud of my daughters! I want to shout their disabilities from the rafters! They struggle more in a day then most people do in their lifetime. They endure constant trips to doctor’s offices, hospitals, labs, therapies and treatments; and take daily medications with stride. They are my little warriors in life, and should serve as an inspiration to society, not ignored or shunned by it.
2009
Mitochondrial disease is a life-threatening metabolic disorder that affects the body’s ability to convert food into energy. The mitochondria are a separate strand of DNA, which exist in every cell except red blood cells, and are responsible for producing 90% of the body’s energy. Individuals with mitochondrial disease can suffer devastating effects from a simple cold or flu, even death.
I can quote the above paragraph in my sleep. I don’t even have to look up the spelling of “mitochondria” anymore. My adorable twin daughters, Julia & Maya, were diagnosed with mitochondrial encephalomyopathy on April 23rd, 2009, shortly after their 4th birthday. I have become a different person since the moment I received that email. Yes, an email.
My memorized paragraph says so much and yet so little. It describes what mitochondrial disease is, but not what it is to Julia & Maya. For them, mito takes its toll on a daily basis. Their compromised energy levels hinder everything from growth to body temperature. Maya once lay listless in her crib for over two weeks, barely eating or drinking. She had gained four pounds in that time: a simple growth spurt rendered her incapable of moving for two weeks. My daughters also over-heat very easily. They “wilt” completely because they do not have the energy required to maintain body temperature.
What mito means to me is almost impossible to describe. My daughters cannot speak or communicate, because their brains are not getting enough energy. I never know if they can walk from the car to the inside of a store to get into a shopping cart, making it difficult for me to take them anywhere alone. They cannot dress or bath themselves, use utensils, get into the car, or express basic needs. They are not potty-trained. I know that when they become listless, over-tired or over-heated, there is a chance that the energy drain is causing damage to their brains & other organs. I have to constantly monitor heat and excursion to keep them healthy.
What mito means to my family is overwhelming financial stress. Julia & Maya require expensive supplements to aid their absorption of nutrients and supply energy. We pay $500 monthly for these supplements, which are not covered by our private insurance or Medicaid. Neither is the tandem wheelchair I need to transport both girls in case of an emergency. Tandem wheelchair pricing starts at $3000. We paid over $10,000 in medical co-pays and deductibles this year alone.
But most important is what Julia and Maya mean to me. They are the smiliest little rays of sunshine to ever have walked this earth. They are loved. Dearly, deeply & wholly loved.
Gina Gareau-Clark www.juliaandmayaclark.com
For additional mito resources www.umdf.org and www.mitoaction.org
