Life-Saving Medical Equipment for Tommy

Hi, my name is Lucy & I’m a mum of 3 amazing children, Sophia (9), Megan (6) & Tommy (3).

I’ve somewhat reluctantly decided to turn to ask others for help financially because I’m desperate and feel this is very time critical.

In January 2023, Tommy had a random episode whilst staying with my parents and stopped breathing in his sleep. By some miracle, my Mum was checking on him at the time and gave rescue breaths and after about 2 minutes, he regained consciousness and started to breathe.

He had no temperature at the time and he didn’t seize, so this was put down to an atypical febrile convulsion.

I purchased a pulse oximeter that he has worn whilst asleep ever since. 8 months went by without anything else, but then late 1 night in August, it happened again. His alarm went off and I ran in to find him unresponsive and not breathing. This time his jaw was clamped. Despite being a Registered Nurse for over 11 years, I completely and utterly panicked, ran into my street screaming and a neighbour of mine managed to eventually get his finger in his mouth and scoop his tongue out of his throat which caused him to gag, vomit and start breathing again. Another consultant appointment and a few more tests followed.

Next, a 3 month gap, and in early December, in the early hours of the morning, his alarm went off as his oxygen sats had dropped to 31%. This time, Tommy was having a full tonic clinic seizure, and had again stopped breathing.

Then most recently, a 3 week gap - Christmas Eve… as I placed him into bed having just left snacks out for Santa & reading him his bedtime story, he seized as I laid him flat and stopped breathing. I can honestly say, that whilst I was giving mouth to mouth, I thought my son was dying in my arms on Christmas Eve. He was unconscious, lifeless, eyes open and blue.

Thankfully, he has made a full recovery each time. But I am living in fear every night, wondering if it’s going to happen again. My daughters have been present every time and although trying to shield them from actually seeing him fitting, my eldest daughter in particular is really struggling with the worry of it, and is getting frequently upset and panicky that his alarm is going to go off.

I’m a Specialist Nurse in a hospital resuscitation team, but nothing can prepare you for having to give life support to your own child.

Tommy is under the care of a consultant and will now be having an MRI scan of his brain under general anaesthetic alongside other investigations.

But as the frequency of these episodes is increasing, and the presentation is changing, I am desperate to purchase some equipment to keep him as safe as possible and also alert us fast if he is to seize again as his current monitor doesn’t alert us to seizures or alarm until his sats hit 80% which is too low.

I’m hoping to get a medical grade seizure mat for his bed, an anti suffocation pillow and duvet, a small portable suction unit and a wearable seizure monitor too. If I’m lucky enough to raise enough, any additional unused funds would go to a siblings awareness and support course for my eldest daughter, and the rest donated to ‘Young Epilepsy’ - a charity supporting young people with epilepsy.

Any donation at all will be so gratefully received, and if you cannot donate, but can share this page, I’d also be so very grateful.

From myself and everyone else that loves Tommy, thank you ♥️