Leanne Steward

12 years ago I gave birth to a bouncy little boy all my scans and checkups at the time showed everything was okay with the baby when my son was born he was very floppy and didn’t drink hardly anything days and weeks went on and still he was very floppy and kept going blue around the face not putting weight on when he was 7 months old he was diagnosed with a rare form of muscular dystrophy Called nemaline Rod myopathy We were told he wouldn’t make a year out after many months of being poorly he was referred to the Royal Brompton Hospital who had noticed that he had secondary lung disease since then he has had many PICU admissions a lot he was transferred to the Royal Brompton Hospital he has very high CO2 and is oxygen dependent the Royal Brompton have gave him a nocturnal BiPAP which uses at night and when unwell to keep him alive as if he sleeps without it he won’t breath as the machine takes over as he has no reserve in his lungs due to being in a wheelchair he can’t run around to clear his lungs so they have also provided him with a vest that vibrates to move any mucus off his chest and lung area back in October 2017 Cody had a pneumothorax (tear in his lung) due to high pressures on the BiPAP and pneumonia in the other lung our local hospital transferred him to the Royal Brompton where we stayed until his birthday 5th of December where we were transferred back to our local hospital on the 15th of December he was sent time we thought yes he’s okay but then on the 20th of December only five days of being at home Cody went into respiratory and cardiac arrest I had to perform CPR and wait for paramedics and the HEMS team to turn up and retrieve him they had to use a defibrillator to get his heartbeat back and a io (drill his knee )to get live saving meds into him he was then sent to our local hospital and transferred to the royal brompton once he was more stable to be moved once we got to the royal brompton he was put into PICU where everything was critical at that stage no one knows till this day why or how he ended up like did on that day but thanks to the Royal Brompton doctors nurses play team and everyone else involved Cody is here to tell his stories of what it is like living with terminal lung disease and what this amazing hospital is really like from a child’s point of view while we were in hospital the Royal Brompton supplied Cody with toys games love care and support that him and myself needed he was in intensive care on a ventilator over the Christmas period away from family and friends mainly his dad and four siblings the Royal Brompton put me up so that I could stay with Cody the whole time we were there they also supplied Christmas presents and birthday presents for Cody and even sent some little bits home to his siblings I can never thank the Brompton and there and the team enough for what they have done and continue to do for my son So this is why I’m doing this run walk fundraiser to give just a small bit back To the wonderful teams who looked after my baby boy when I couldn’t do nothing for him I’m not asking for a lot every penny counts thank you for your support

Leanne Steward