ON FEBRUARY 08TH, 2016, I BECAME AN UNCLE AGAIN TO A BEAUTIFUL YOUNG BABY GIRL,
"MIA ELIZABETH FAITH STANLEY" @ 7 LBS & 9 OZ, 19.5 INCHES!!!
HER LOVELY PARENTS, EDDIE STANLEY & TIANNA WILLIAMS.
I WAS SO EXCITED TO MEET HER BUT MIA WAS DIAGNOSED WITH,
What is Epidermolysis Bullosa (EB)? Epidermolysis Bullosa (EB) — "The Worst Disease You've Never Heard Of." Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.
Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly. While many who live with milder forms of EB can lead long and productive lives, the list of manifestations and secondary complications in the more severe forms is lengthy and requires multiple interventions from a range of medical specialists. Those forms of EB result in disfigurement, disability, and in some cases early death. Epidermolysis Bullosa can result from a genetic mutation in one of 18 genes. These mutations, or errors in the genetic code, do not allow the body to either produce an essential protein or produce a working form of the protein thus resulting in extremely fragile skin. EB can also be an autoimmune disease in which the body produces antibodies to the structural components of the skin. The severity of EB is generally dependent upon many factors including type, subtype, and inheritance pattern. EB has been categorized as encompassing 5 major types (Simplex, Junctional, Dystrophic, Kindler Syndrome, Aquisita) and 31 subtypes, therefore it is commonly referred to as a group of disorders. Other manifestations of EB include: anemia, cardiomyopathy, syndactyly (fusion of the fingers and toes), renal insufficiency, dysphagia (difficulty swallowing), malnourishment, cancer, constipation, osteoporosis, muscular dystrophy, and pyloric atresia.
WHEN I HEARD OF HER ILLNESS, I SHOCKED AND STARTED PRAYING FOR A HEALTHY RECOVERY, AT THAT TIME I HAD NO IDEA WHAT "E.B" WAS. AND AFTER READING UP ON IT, I WAS SHOCKED!!!
BUT I STILL PRAYED AND COULDN'T WAIT TO SEE HER.
IT WAS ALMOST A MONTH LATER AFTER RETURNING FROM A TRIP FROM HAWAI'I THAT I FINALLY GOT TO MEET AND SEE HER IN PERSON. SHE WAS PRECIOUS AND BEAUTIFUL THAN EVER. WHILE IN HAWAI'I VISITING MY KAHEALANI, SHE GAVE MIA A HAWAIIAN NAME...
KAMANA'O'I'O WHICH SIMPLY MEANS "FAITH".
MIA'S JOURNEY HAS BEEN A VERY TOUGH AND COURAGEOUS JOURNEY. SHE WENT UP AGAINST SOME UNIMAGINABLE CHALLENGES AND HAS BEAT EVERY OBSTACLES THAT CAME BEFORE HER.
BUT ON AUGUST 09TH, 2016, GOD WAS SO IMPRESSED WITH HER "FAITH" AND CALLED HER HOME TO BE WITH HIM, OUR LORD JESUS CHRIST.
WATCHING MIA AND HER MOTHER THROUGHOUT THE MONTHS DID NOTHING BUT INSPIRE ME TO BE GRATEFUL AND THANKFUL FATHER AND HUMAN BEING.
WHEN I HEARD OF HER PASSING, I DID BREAK DOWN AND ONLY WANTED THE BEST FOR HER AND AFTER CLEARING MY HEAD, MIA INDEED WAS FREE FROM PAIN AND IS NOW SURROUNDED WITH LOVE & PEACE FOR ETERNITY.
MIA HAS TOUCHED THE ENTIRE DELTA KUSKOKWIM REGION, PEOPLE FROM ALL OVER CAME AND SAID THEIR "GOODBYES" AND PAID THIER RESPECTS.
AS I WITNESSED THE BEAUTY OF THIS WONDERFUL EVENT, I AM AND WILL ALWAYS BE HONORED AND LOYAL TO MY BETHEL, ALASKA OHANA, "THE WILLIAMS OHANA" WHO HAS TAKEN ME IN AS THEIR OWN.
AS WE GET READY TO TAKE MIA TO CHURCH FOR HER FUNERAL SERVICE, THESE PICS CAPTURED MY HEART AS I WATCH THE STRENGTH OF HER PARENTS AND HER LOVING FAMILY GIVING THEIR FINAL GOODBYES...
SUCH A BEAUTIFUL TURN OUT AND FAIR WEATHER TOO.
ALOHA A HUI HOU E KAMANA'O'I'O... I WILL REMEMBER YOU... ALWAYS & FOREVER!!!
MY BROTHERS IN ARMS, KA'IWA AND I WERE SO HAPPY TO BE THERE FOR THOR, JOANNE, TIANNA, KAYLA, SVEN, AND MIA.
WE WILL ALWAYS STICK TOGETHER THROUGH THICK AND THIN NO MATTER WHERE WE ARE.
LOVE & ALOHA TO MIA AND HER ENTIRE OHANA AND THANK YOU FOR GIVING THE OPPORTUNITY TO BE PART OF YOUR BEAUTIFUL LIVES!!!