MCT8 - AHDS Foundation
Parents of a severely disabled baby boy have launched a £250,000 fund-raiser to funda specialised home to suit his complex needs. Thomas and his twin brother James were born by Caesarean section four week early in March last year.
When I first met Andreas-Rares, I could not believe that behind these bright children's eyes, there is was a difficult and unequal battle.
When your life swerves off its expected course without warning, you can be left highly disoriented. Reeling. All perspective and sense of certainty can vanish. But when you’re a parent, there’s no time to stop and recalibrate. No time to stop the world so you can pat yourself down after the explosion and check that everything’s intact. The daily demands of a young family wait for nobody.
Ondine Sherman is the mother of three children, co-founder of an animal rights movement and the daughter of Brian and Gene Sherman. She has released a memoir called The Miracle of Love. The Miracle of Love follows Ondine’s journey from her own childhood to the roller-coaster ride she experienced after doctors diagnosed her twin sons with a rare genetic disorder.
A CHILD is born. We unspool in our minds the narrative arc of future accomplishment. First smile, step, word, day at school. But what if this picture is shattered, frame by frame, by a slowly dawning realisation that all is not as it should be?
My name is Erika Darccin Garcia, I am 38 years old, I live in São Bernardo do Campo / SP and I work in a Trading. Thiago de Lima Garcia, my husband, works with Sales Intelligence and we are parents of the twins Matheus and Felipe. My gestation was quiet and I had no intercurrences. The boys were born on 05/02/2013 of 32 weeks because my purse broke, considered premature, they stayed 83 days in the hospital.
Love is a miraculous force that helps the parents of sick children focus on the beauty of their children’s lives and keeps the flame of hope for a cure alive, Pope Francis told an Italian couple and a group of their supporters. Members of the group, known as “Una Vita Rara” (“A Rare Life”), had just completed a relay run of more than 430 miles to Rome from Monticelli Brusati in northern Italy to raise awareness about Allan-Herndon-Dudley syndrome.
Allan-Herndon-Dudley syndrome (AHDS) or MCT8 thyroid hormone transporter deficiency is a rare congenital encephalopathy that affects male subjects characterized by psychomotor retardation, axis hypotonia, limb spasticity, dystonia, epilepsy. The disease is due to mutations in the SLC16A2 gene that produces the MCT8 protein that transports the thyroid hormone T3 into the cells where it performs its main functions, especially for the proper development of the nervous system.
Elis Adventures: Watch Eli's reaction to hearing, for the first time, a song written for him by Songs of Love. Songs of Love create custom songs for kids that visit Give Kids the World Village.
A heart-wrenching memoir about a mother's desperate quest for a miracle medical cure for her twin sons In her early thirties, Ondine Sherman felt like her life was complete. She'd fulfilled her lifelong dream of a career in animal welfare, was married to a man she adored, had a happy, healthy daughter, and was lucky enough to enjoy total financial security. But life started to unravel for Ondine after the birth of her twin sons, Dov and Lev. By six months of age they were failing to meet important early milestones, forcing Ondine and her husband to embark on an odyssey of consultations with doctors and specialists.
This is a fairy tale but it's not your typical fairy tale. It's a story which is very grounded in reality and its challenges. You will most certainly find monsters in here. Horrible, heartless monsters. You will also find hope, love, perseverance and transformation.
Rare genetic error at Arno (5) has enormous consequences. Arno Hemmeryckx is one of the 200 children worldwide who suffer from Allan-Herndon-Dudley Syndrome and therefore can not step, sit or talk. Because Arno's health care costs are so high, his parents organize a charity on 9 October at GC De Melkerij in Zemst.