Help Sadie Breathe

Update

Happy Coronation Day!

9 days post surgery and Sadie is doing really well, she is pretty much back to normal, just a little bit of daytime venting needed but Drs expected it as such a big surgery. We go back to hospital on 22nd May 2023 (Sadie’s 7th birthday) for device switch on, will be in hospital for about a week whilst they find the right amplitude for the device.

We are extremely grateful for all your kind donations as without you all, this would never have happened. Our costs have spiralled due to the unplanned cardiac surgery and the 2 month stay in London so every penny really has counted. We will keep you all posted as to the next stage in Sadie’s journey. Lots of love Sadie and Family ❤️

Update

So it’s been a bit of a whirlwind (not in a good way) 12 days!

Having arrived at Great Ormond Street Hospital ready for Sadie’s surgery, we unexpectedly found that the lead to Sadie’s cardiac pacemaker had detached, meaning that the surgery for Sadie’s breathing pacemaker had to be postponed.

Fast word to last Friday 31st March, 2hr 40mins cardiac surgery to extract the broken lead, with a bleed to her artery during dissection having to be stabilised; and we are now back on track for breathing pacemaker surgery on 19th April.

Obviously this curve ball has added another month of accommodation costs, costs for unplanned cardiac surgery and so on. But Sadie is a trooper as usual!

Original post

We are (unexpectedly) asking for help to raise a portion of the funds necessary for Sadie to have Diaphragmatic Pacers implanted on the 22nd March 2023, at Great Ormond Street Hospital, London, so she may live a safer, healthier, more independent life without the need for a ventilator.

About Sadie and CCHS

Imagine the joy of cuddling your newborn, asleep on your chest. Or that moment of quiet, during a long car journey, when the kids finally stop fighting and you look back to their sleeping faces.

That is our worst nightmare. 

Every time our beautiful daughter falls asleep she might die. Sadie, aged 6yrs, is one of only approximately 1200 children worldwide, with a very rare genetic condition called Congenital Central Hypoventilation Syndrome (CCHS), a disorder of the central nervous system.

Sadie doesn’t just stop breathing when she's asleep. If she is tired, sick, concentrating or bored, she will under-breathe. Simple tantrums in her younger years would regularly render her unconscious, without oxygen and often seizing. Thankfully we're in a much better, safer place now and Sadie loves attending school with the supervision of a nurse.

The part of Sadie's brain that controls automatic body functions is impaired and doesn't recognise the stimulus to breathe, or her brain may “forget” to tell the heart to beat (Sadie has a cardiac pacemaker). Other issues may be digestion-related, circulatory, vision or body temperature regulation to name a few. 

There is currently no cure for CCHS.

Sadie's opportunity

Sadie is completely ventilator dependant now, breathing via a tube to a tracheostomy (hole in the neck) when she's asleep. This makes her electricity dependent as the machine only has 8hrs of battery life.

The Diaphragmatic Pacer System (or Phrenic Nerve Pacers) electrically stimulates Sadie's diaphragm muscles so that air is pulled into her lungs. It consists of surgically implanted receivers and electrodes and an external transmitter. This is not provided by the NHS, despite being an established treatment pathway in other countries.

We hope to:

Please help us to give Sadie the life she deserves - our brave, smart, courageous and funny Sadie.