Copyright birminghammail
A Midlands mum has shared her battle to get doctors to correctly diagnose her son after they failed to detect his progressive muscle-wasting condition. Mum-of-two Kasey Mumford says it took 23 appointments before doctors diagnosed her newborn son, Chester, with a rare condition called Spinal Muscular Atrophy (SMA, Type 1). Chester was diagnosed at six months but he now relies on a ventilator and needs a nasogastric tube for feeding due to the delay. READ MORE: Birmingham detectives answer burning question over schoolboy abduction attempt Kasey, 24, said her mother’s intuition had told her something was wrong and after months of back-and-forth appointments, which included seeing nine different doctors, she was proved right. Chester, Kasey's second child, was eventually diagnosed correctly after he was referred to Heartlands Hospital in Birmingham . "That day will be engraved into my mind forever," said the mum, from Warwick. "The day my worst fears as a mother came true, and the day I found out the system had failed my son. It took 23 appointments to get rare muscle wasting condition diagnosis. "Chester had his first birthday in August, but his life is so different to his older sister’s at that age. “He needs a ventilator to breathe when he’s asleep or unwell. He has to be fed through an NG tube because he can’t eat orally. "He can’t sit unaided or hold his own head up. Can’t walk or crawl. "The future is so uncertain for Chester, but if SMA was included in the newborn screening heel prick test, he could have received treatment from birth - and he’d have a very different life." She added: “We’d been fighting for answers for so long and I raised every concern I could think of with medical professionals. "But time and time again I was told it was colic, or constipation, or that I was just an anxious mum. I knew I had to keep pushing until I found out what was wrong with my little boy. “When he finally got diagnosed the consultant told us if it had been even a couple more weeks Chester wouldn’t have been here. I just felt like I’d failed as a parent." Kasey said she is heartbroken from knowing all this could have been prevented. "He would have received treatment before his condition deteriorated," she said. "He might not have needed overnight ventilation, he might be able to feed orally, he might be able to weight bare. He would have had the chance of a typical life." Despite everything Chester has already gone through in his short life, his mum says he's "full of light" and "personality". "He plays, he smiles, he chats away in his own little way and he brings us so much joy," said Kasey, who stars with her son in a charity film by Muscular Dystrophy UK. “I’m passionate about sharing our story not for sympathy, but to raise awareness of why Newborn Screening is so important. "I will continue to speak up - for him, and for every baby who deserves a better start. In the hope that no other parent will have to go through months of being dismissed, and that no other baby will have to fight as hard, as Chester has, just to live.” Click here for more information about Muscular Dystrophy UK - a leading charity for more than 110,000 children and adults in the UK living with one of over 60 muscle wasting conditions.
