- Видео 11
- Просмотров 5 375
Keep Me Breathing
Добавлен 28 окт 2022
When Sleeping Is Deadly - CCHS
Meet the beautiful family of Eloise, Ash, Harrison and Beauden. Filmed in July 2024 and shown at The Arundel Film Festival. Beau Kent. Congenital Central Hypoventilation Syndrome (CCHS)., Learn about how Keep Me Breathing are working to develop a treatment for patients with CCHS, an ultra rare genetic disease.
Просмотров: 1 134
Видео
Beau Kent. Congenital Central Hypoventilation Syndrome (CCHS). Keep Me Breathing
Просмотров 9421 день назад
Meet the beautiful family of Eloise, Ash, Harrison and Beauden. Filmed in July 2024 and shown at The Arundel Film Festival. Learn about how Keep Me Breathing are working to develop a treatment for patients with CCHS, an ultra rare genetic disease.
Keep Me Breathing - AGM & Advisory Board Introduction
Просмотров 96Год назад
On 31st March a group of experts came together to discuss Keep Me Breathing's plan for treating CCHS (Ondine's Curse) in London, England. This is an introduction to the attendees. Please email info@keepmebreathing.com for more information.
BBC South - Keep Me Breathing - The Breathing Pacemaker
Просмотров 183Год назад
Keep Me Breathing Founders and Advisory Board Members appear on BBC news to discuss The Breathing Pacemaker. The life changing, life saving treatment being built for patients who have CCHS, a rare disease also known as Ondine's Curse. With CCHS, children stop breathing the moment they fall asleep. Kept alive only by artificial life support
Casper's Story - The inspiration for Keepmebreathing.com
Просмотров 378Год назад
This is Casper's story. Born with Congenital Central Hypoventilation Syndrome (Ondine's Curse) and Neuroblastoma (a cancer). There is no cure and no treatment beyond artificial life support. We are actively changing this and developing a new treatment. We need your help. Please visit Keepmebreathing.com
CCHS (Ondine's Curse). Potential routes to a cure. Keepmebreathing.com
Просмотров 235Год назад
Congenital Central Hypoventilation Syndrome is a lifelong and life threatening disease with no cure. Clinical Geneticist Alex Deng discusses some potential routes to better treatments, removing the need to artificial life support when sleeping, as well as potential cures. Includes Phrenic nerve stimulation and Crispr technology
Keep Me Breathing. Why we exist. Congenital Central Hypoventilation Syndrome. Meet Casper.
Просмотров 1,6 тыс.Год назад
Keep Me Breathing was inspired by the birth of a beautiful boy, Casper. Born with Congenital Central Hypoventilation Syndrome (CCHS). Children with CCHS require artificial life support every single time they sleep or take a nap as they 'forget to breath' while asleep. Donate now at keepmebreathing.com There is no treatment or cure aside from mechanical ventilation via a machine but we are activ...
Casper's Body - Potential CCHS Symptoms
Просмотров 216Год назад
A beautiful boy called Casper born with a rare disease. His parents, James Oakley and Stephanie Roberts discuss over some of the additional medical interventions required for Casper as a patient with Congenital Central Hypoventilation Syndrome (CCHS). Also known as Ondine's Curse. Donate to Keepmebreathing.com and help us develop the treatments to keep these children alive and off artificial li...
What is Congenital Central Hypoventilation Syndrome (CCHS) - Keepmebreathing.com
Просмотров 908Год назад
Clinical Geneticist Alex Deng discusses what Congenital Central Hypoventilation Syndrome (CCHS) actually is, aside from being a rare disease. Also known as Ondine's Curse. Donate to Keepmebreathing.com and help us develop the treatments to keep these children alive and off artificial life support every single time they go to sleep.
What is the Phox2b gene and how does it affect children with CCHS - Keepmebreathing.com
Просмотров 305Год назад
Clinical Geneticist Alex Deng discusses the Phox2b gene and how it affects patients born with Congenital Central Hypoventilation Syndrome (CCHS), a rare disease. Donate to Keepmebreathing.com and help us develop the treatments to keep these children alive and off artificial life support every single time they go to sleep.
What are features of CCHS - Keepmebreathing.com
Просмотров 198Год назад
What are the features of CCHS Explainer. Listen to Clinical Geneticist Alex Deng clearly explain some of the most common features of babies born with Congenital Central Hypoventilation Syndrome (CCHS), a rare disease. Donate to Keepmebreathing.com and help us develop the treatments to keep these children alive and off artificial life support every single time they go to sleep.
My grandson has this as well. He is blessed that he only has to use a bi-pap.
My son has this as well. Born in 2017, has a trach. US - Minnesota. Nursing coverage is definitely the biggest never ending stress. There are pacers now to directly stimulate the diaphragm. I'm assuming the technology you're supporting is intended to do more, like monitor 02 simultaneously to help tye device decide on various parameters.
My prayers goes to this adorable little boy, i wish & hope this condition miraculously just goes away from him. I know exactly what the parents are going through as my son also has it. Im also aware its a life long condition but i pray that some cure or treatment comes out in the near future for CCHS.
Mon fils a ondine également un hirshprung
Les meilleurs soignants pour le syndrome de ondine sont les français hôpital robert Debré paris
Bonjour vous avait eu une expérience avec l'hôpital?
@@sevilaydurcan4063 oh que oui j y suis resté 8 mois pour mon fils
How can I contact with the parents or the doctor please help my doughter have the same syndrome
Mon fils est atteint de cela je suis français peut être que je peux vous aider
info@keepmebreathing.com xx
MY Son also has cchs
Hi! I have CCHS and was curious as to what part of my body was explicitly defunct. I knew it was an automatic system problem but wasn’t sure if my brain wasn’t sending or my nerves weren’t receiving. Thanks for clarifying!
My son has this. It's your brain not triggering your body to breathe. Take care of yourself!