Hope at Last for Children Who Can’t Breathe While Asleep
Keep Me Breathing, a new research charity developing ‘The Breathing Pacemaker’
Congenital Central Hypoventilation Syndrome (CCHS) is an extremely rare genetic condition which causes children like Beau to stop breathing the moment they fall asleep.
Being born with CCHS is devastating. No cure. No therapeutic options available while asleep beyond artificial life support.
Painfully… the technology to treat CCHS exists, but the investment does not. We are addressing the urgent need to help and save the lives of children diagnosed with CCHS.
We are building The Breathing Pacemaker with Cambridge University to help the hundreds of children in the UK with CCHS breathe on their own at night without artificial life support. Please support us.
We are a high impact charity based in Brighton. 100% of donations go directly towards developing The Breathing Pacemaker. The Technology Exists. The investment does not… yet. We’re changing that.
Artificial Life Support: One nap or sleep without a ventilator can kill children with CCHS. They need around the clock watching from a trained professional or parent every single minute that they are asleep.
Rare and Without Investment: CCHS is rare. However, figures can be severely underestimated due to a lack of understanding around the condition. In some cases, CCHS can cause sudden infant death syndrome (SIDS).
Meet Beau
In September 2021 our life flipped upside when Beau was not only born at 29.5 weeks, but was also diagnosed with CCHS at 3 months old.
At the time, we had a 2.5-year-old and were running multiple local businesses. We had to very quickly navigate travelling back and forth to London with Harrison, undergoing nurse-like training to care for our new tracheostomy ventilator dependant baby, whilst also balancing the emotions of this traumatic medical journey we had been dealt.
- Prematurely born at 29+5 weeks, 22nd September 2021, unrelated to CCHS.
- Spent the first 9 months of his life in hospital, Brighton & Evelina, London.
- Diagnosed with CCHS, Hirschsprung’s and Chronic Lung Disease
- Gastrostomy for meds and fluids
- Currently tracheostomy ventilated 24/7
- Doesn’t speak or make sounds due to tracheostomy.
We had to sell a business, and I became a full-time carer for Beau. Quickly we had to settle into a ‘new life’.
Harrison has been an amazing big brother, he understands that sometimes Beau needs full attention, he has also had to deal with carers coming in and out of his house every single day.
Support Us
Fundraise and support us to make a real, tangible difference to children born with a life limiting illness and help organisations like Cambridge University build The Breathing Pacemaker with a 5 year realistic goal.
If you have an idea for a fundraiser, would like to support us in your next sporting event, or would like to donate please contact Eloise at eloise@keepmebreathing.com
Facebook https://www.facebook.com/keepmebreathingfb
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Website https://keepmebreathing.com/
Written by Eloise Kent, previous owner of Visit Arundel