Hi everyone meet Alexander. Charming, charismatic and has one of the most infectious smiles I have ever seen. He is 10 years old. His mother,Jessica, is a close friend of mine and is a warrior. Once she was asked. "How do you deal with this alone??" Her response was very humbling ... "I'm just doing what moms do... I'm just loving my child" Everyday she deals with situations that are completely normal to her but very foreign to the rest of us.

Alex was born with a very rare disease called MMA (Methylmalonic Acidema )
There is NO CURE for MMA.

Alexander is being "worked up" for Live Liver transplant. The new Liver will give Alexander a chance at a life without vomitting, a chance at a life where he can play ball and run without risk of decompensating. A chance to live a life with less metabolic crisis essentially giving him a stronger chance to grow and potentially, hopefully even let him eat a diet that is unrestricted. 

Below is just a summary from one of her status on Facebook trying to explain what she goes through.

"Longest status ever...in 5, 4, 3, 2, 1...

This is Methylmalonic Acidemia/Aciduria (MMA)...and some extremely basic information pertaining to...because I can't keep up with all the messages and texts. I WON'T keep up with all the texts and messages. I have written on Facebook many times about MMA and even my very closest friends and family will say that I don't actually talk MMA often. It's complicated, I get upset and I whole heartedly have learned that there IS such a thing as knowing too much. I don't enjoy seeing the point in the conversation when I "lose" the person with whom I am talking. Not everyone can comprehend and it can be hard emotionally for some people to disassociate. So. While I am extremely excited at the level of interest people are showing over the new liver, I don't always have the words to describe how 10 years of living with MMA brought me to this choice of treatment. Because The Liver is a CHOICE OF TREATMENT.
This is the best I can say for now...

If you read this article, and understand any of it, note that Alexander has CblB (which is not isolated) and is non responsive to B12 injections. He is also very rare in that not all MMA kiddos present with high ammonia levels. The ammonia breaks the blood brain barrier and cause more damage with each crisis. This article is very clinical and does not accurately depict the daily life of living with MMA. There are many complications/issues/diseases, for lack of better terms, that come with MMA.

Acidemia pertains to blood and Aciduria pertains to urine. MMA is an organic acidemia and there are a many different diseases/disorders classified as such. Statistically MMA varies from country to country, province to province and state to state. In Canada, I now know of 4 living patients, other than Alexander. One has the same mutation as him. When Alex was born the worldwide number was less than 90.
A metabolic crisis leaves brain, heart, and renal damage to name a few things. Every crisis is life threatening and a common cold can bring on crisis.
 When Alexander was diagnosed he was in his first metabolic crisis and subsequently his first coma resulting in his first (and second) metabolic stroke and his first heart failure. (Alberta did not start newborn screening until 6 weeks after he was born.)I was horrified to learn that statistically (and this is still an accurate statistic world wide) that up to %80 of sudden infant death syndrome, or SIDS, cases could be chaulked up to a metabolic disease and or an organic acidemia.

MMA IS A SILENT KILLER.

The effects of the acids vary and for the most part our children do not look sick. Some have physical disabilities that go beyond Alex's. Alexander should never have survived his first coma. Or his second. Or his third. Alexander should never have lived past infancy. Alexander should never have lived past the age of two.


Alexander lives DAILY with heart disease, kidney failure, lethargy, weak muscle tone, confusion, chronic vomittimg issues, Asperger's. live in choas. Complete chaos. Endless days/nights of vomitting and mounds of laundry. He lives with lethargy. We live with weak muscle tone. He lives with blood clots and tied off veins. He lives ammonia and Methylmalonic acid running through his blood and urine.  He lives with cancer meds but yet not cancer. He lives with genetically modified foods and formula. He live with compounded enzymes. My family  lives with disease. We live with fear...The lists go on and on...sigh.
I want people to understand that EVERY SINGLE SECOND OF MY DAY IS DEVOTED TO KEEPING THE BOY ALIVE.  And this liver translant gives him a fighting chance at life."

Now the exciting news is. ...the liver Transplant team has been assembled and we have 9 weeks to help ease her mind. Along with good news comes bad. Expenses that won't be covered by grants. Time spent away from her other children ..away from her home. Please. Take the time to read the article and if you wish, donate. Help me ease her mind I know it's hard enough being a single mom but I can not imagine having this on my plate as well. This warrior mom still finds the time to be everyone else's Angel in disguise while taking care of all 3 of her children alone.