My son, Gage Heath, is six years old. He seems healthy on the outside; looks, however, can be deceiving, for he has a serious disorder that can kill him if we don't follow strict dietary and medical guidelines.
My son has maple syrup urine disease (MSUD). He apparently was born with it. He seemed healthy at birth; however, a few weeks after his birth, doctors became concerned that he had something going on. His urine smelled strange, almost sweet, like maple syrup. He was immediately tested; it was found that he had maple syrup urine disease.
Because of his illness, he has to be on a strict diet free of amino acids (particularly leucine, valine, and isoleucine), monitored by a dietician and his doctors, and have frequent blood tests. He has to stick to this diet, or else he could end up brain damaged and disabled because of the buidup of poisonous toxins that can destroy his kidneys and neurological functions. He could also die.
It's that serious.
He has to drink plenty of fluids (particularly water) and make sure he doesn't get too dehydrated. He also has to go to the doctor's if he becomes ill because so many variables can happen.
As long as Gage sticks to his diet plan, sees his doctors, and watches himself in hot weather and makes sure he has plenty of water/fluids, then he should be fine, which he has been (so far, knock on wood!). He may have a serious disease; however, he is a very active, happy little boy who loves life.
Once in a while, Gage becomes sick enough to go into the hospital for monitoring/treatment of pancreatitis, kidney infections, or bladder infections; more often than not, he's as fit as a fiddle. No complaints from him; he is one of the healthiest members of our family!
Until our son was diagnosed with maple syrup urine disease, we had never even heard of it. We then heard of a distant cousin, whose little girl had it. We then saw the child; she was in a sad way. Her parents didn't get her treated; now their daughter, age seven, is severely disabled, unable to do anything for herself. She is in a wheelchair, can't talk or see, and requires twenty-four hour care. She is a sad case and a harsh reminder of what could have happened to our own son.
Her parents are paying the price. The child's name is Chloe Grace, and now her parents must live with the implications of having a child who is severely disabled, both mentally and physically. She is just a little older than Gage, but seems more like an infant.
To see Chloe Grace like this only makes us realize just how blessed we are to have a healthy child, even with having this condition. We are indeed fortunate, and we plan on helping our son in every way possible, to ensure a bright, happy future for him.
Like most six-year-old boys, Gage loves baseball and football. He loves to watch "Scooby Doo, Where Are You?" on television, read, write, and go to school. He is extremely smart, so much, in fact, that when school starts back up this fall, he is going to be placed in the Gifted/Talented class at his school; he is way ahead academically of his peers.
Gage also loves to jump on the trampoline, annoy his big brothers Marcus and Cody (they're eight and ten) and the family dog (in a good way), and go to church, where he sings in the children's choir every week. He is an extremely active little boy; we coulnd't be prouder of him!
Well, Gage is calling me, so I will go for now. I will write in here again with more updates about Gage in future postings. Until then, this is his mom, Jericka Lee-Ann Westerbrook, signging off! Take care and may God bless you always!
~Love, Jericka Lee-Ann, Gage's mom. :)
*To be continued.*
