_Adrenoleukodystrophy (ALD) is a rare, inherited disorder, {the female carries the defective gene, but only males are affected by it; it's usually every 3rd Generation} that leads to progressive brain damage, failure of the adrenal glands and eventually death.
ALD is a disease in a group of genetic disorders called leukodystrophies, whose chief feature is damage to myelin. ALD strips away myelin, a protective sheath surrounding nerve cells. When this happens, the affected individual slowly begins to lose body functions and eventually becomes mute. The steady myelin loss is due to an overload of very long chain fatty acids that the body cannot dispose of. {This is the part of the brain that functions the ability to move parts of our body. EX. the part that tells your shoulder, to tell your arm, to tell your hand, to move your finger.} MRI examination reveals white matter abnormalities, and neuro-imaging findings of this disease are somewhat reminiscent of the findings of multiple sclerosis. Genetic testing for the analysis of the defective gene is available in some centers. The patients usually present with weakness and numbness of the limbs. Most victims of this form are also males, although some female carriers exhibit symptoms of AMN.[3] Very little is known about how ALD is inherited. Girls who have the gene do not show any symptoms, and not every boy with the faulty gene goes on to develop the devastating childhood form - ALD. Signs begin to show at approx age 4, normal life expectancy is age 20ish.
Childhood cerebral type is characterized by:
Changes in muscle tone, especially muscle spasms and spasticity Crossed eyes Decreased understanding of verbal communication Deterioration of handwriting Difficulty at school Difficulty understanding spoken material Hearing loss Hyperactivity Worsening nervous system deterioration Lack of brain-to-body coordination Loss of control and temper in outbreaks (random abrupt berserk behavior) Coma Decreased fine motor control Paralysis Seizures Swallowing difficulties Visual impairment (Blindness)[4] ==================================================
MY POOR SISTER, NEARLY LOST HER MIND! THAT POOR KID, SHE STRUGGLED.. THE THOUGHTS THAT RACED HER MIND, as would any Loving Parent. THOUGHTS that, MAYBE SHE WAS WRONG IN DECIDING TO HAVE HIM GO THROUGH WITH THE SURGERY; SHE BLAMED HERSELF..THE OVERWHELMING HELPLESSNESS A PARENT FEELS.. QUESTIONING, DOUBTING YOURSELF. WHEN YOU HAVE TO MAKE A DECISION, WITH THE ONLY OPTIONS AT HAND.. Lord, Knows after having going through all that isn't enough~could you imagine an officer coming and arresting her, claiming she was neglectful, in deciding on the surgery, having not been in the best interest of your child~that decision..wasn't right! aND THEN, TAKE AN ALREADY ILL CHILD, WITH A LIMITED TIME HERE TO SHARE WITH LOVED ONES, AWAY FROM THEIR PARENTS AND SIBLINGS? THIS IS MADNESS! Who are we to do these things to loving FAMILIES? ================================================ EMMA'S MOTHER BRANDY: Why on earth a person with the God given, full use of a brain, and common sense~would entertain the notion that a parent, put herself in debt; spend hours reading labels of food products to insure it contains nothing that will harm her baby, the endless responsibilities- be thought to do intentional harm to her child, taking that ill child from her momma... WE, WHO ARE BLESSED,COULD NEVER IMAGINE,WE HAVE NO IDEA, NOR RIGHT, TO TAKE AWAY ALL THAT SHE'S INVESTED. IT'S HER GOD GIVEN RIGHT, WHICH SHE HAD, UP TILL THAT FATEFUL ABDUCTION DAY, BEEN DOING THE BEST SHE CAN; FOLLOWING ALL DR.S ORDERS! THEY TOLD HER NOT TO GIVE HER ANYTHING A CERTAIN NUMBER OF HOURS BEFORE THE TESTING! SHE WAS REASSURED TIME AND AGAIN-IT WOULD BE OK! GIVE HER BACK HER MOMMA !!
_Keystone Hospice: A commitment to making the most of life, every day. As an independent and not-for-profit hospice, Keystone Hospice is able to set its own priorities. For patients and their families, it means we focus solely on our mission to provide the best possible care, ensuring each day can be lived to the fullest. Keystone Hospice provides care specifically designed to the needs of each individual. Care emphasizes empowering patients and families t make care decisions; continuing normal household activities for s long as possible; respecting each individual’s choices about how to live their remaining life; and honoring the legacy of that life. got Zachary’s terrible pain under control so that he could live comfortably and happily for two more years. Gail also arranged for counseling and other services for the entire family, including Zachary’s two-year-old brother, Lucas, and convinced Paula to let Zachary go to school, which he loved and attended to the very end.. “Hospice allowed Zachary to die with dignity, at home, in his mother's loving arms, surrounded by his family,”
http://zachsway.weebly.com/
I remember, so vividly, the day the Doctors gave my sister and brother in law the prognosis that Bone Marrow Transplant was ~Unsuccessful~
The phone call from my brother in law began with his asking me if I had a PhoneBook directory. But, of course I did, but if I didn't, I'd go borrow one.
He said Greatttt..Can look up for me and compile a list of all the Witch Doctors, or VOODOO. At the time I'm totally oblivious to what he just said to me-and I say, sure-I'll call you right back. He asked, if I can't find it in the book, would I be so kind as to call the Phone Directory assistance. He continued to say, and if you can think of anyone else, get me that too. And I asked~meaning? He says, You know~what else would, stuff like that be labeled? IT HITS ME!I SAID-JOHN, WHAT AM I DOING? He explained the Bone marrow Transplant was unsuccessful, we're moving to Plan B. Which is getting a witch doctor or Voodoo spell. Do you think it be better to just call and get a Jamaican/Haitian Operator. I will do anything, go anywhere~for them to help save ~MY BOY~ I SAID, OK, THIS MIGHT TAKE A BIT LONGER THAN I THOUGHT, BUT, I'LL GET RIGHT BACK WITH YA! ================================================= I CAN'T HELP BUT WONDER, WITH THE PERVERSION AND ABUSE OF THOSE IN HIGHER POSITIONS, UPON HEARING THIS CONVERSATION, OF LOVE, DESPERATION; AND JUST A MERE MEANS OF A WAY, OF COPING AND HANDLING A BAD SITUATION... WOULD they GO SO FAR AS TO, IN THE BEST INTEREST OF THE CHILD'S SAFETY, PROTECT HIM FROM A CULTURAL RITUAL!! THIS IS HOW RIDICULOUSLY OUTTA OF TOUCH AND OUTTA HAND THESE SITUATIONS HAVE GOTTEN. IT'S PREPOSTEROUS~MEANWHILE, REALLY BADLY ABUSED CHILDREN, NEEDFUL OF THE DEPT.S ATTENTION, GO IGNORED..
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THIS IS THE SONG DEDICATED TO "ZACHARY
FOR THOSE INTERESTED IN BEING TESTED FOR DONOR MATCHING THE FOLLOWING LINK AVAILABLE WILL SEND YOU A KIT: DKMSamericas.org