‘When baby Kodi left us, it tore our world apart’
THE heartbroken family of a 13-month-old son who died on New Year’s Eve to an extremely rare condition have spoken of their world being torn apart.
Kodi Phipps died on December 31 after suffering from a seizure caused by Pelizaeus-Merzbacher disease (PMD), which is estimated to affect only around 1,000 people in the UK.
Dad Jordan Phipps, 37, from Rhymney, said Kodi was born one month premature in November 2016.
Mr Phipps said: “He stayed in hospital for one or two days because the doctors noticed his breathing was a bit off. He came home and a few days after he developed a nystagmus, where his eyes would start shaking. The doctors said that was because he was born premature, but we thought something was not quite right. We took him to a second doctor who said it was normal because he was premature, too. But we knew deep down something was not quite right.”
It was only after mum Sara Hiscox, 26, went for a six-week check up that another doctor noticed Kodi and said he needed to be rushed into hospital.
After genetic testing Kodi was diagnosed with PMD, which affects the brain and spinal cord.
Kodi often suffered from 40 seizures a day, and at one point had 137 in 24 hours.
Doctors prescribed him dozens of different medication and he later had to be tube-fed.
Mr Phipps said the condition is “extremely” rare and that a doctor of 40 years at Prince Charles Hospital, Merthyr Tydfil, had never even heard of the condition.
He said: “It was the end of the world for us. We were just thinking what it means for our boy. They said he should live up until he’s nine or 10 years old, so we just took each day as it came. It was heartbreaking. One day I was sat outside crying, me and my partner would take it in turns crying because we didn’t want our other little boy to see us upset. And I thought, ‘I should be in there making the most of our time with our boy.’
After giving Kodi a feed on New Year’s Eve, Mr Phipps and Ms Hiscox went to bed before being woken by their son having a seizure at around 5.45am.
Mr Phipps said: “Normally after a seizure he would cry, but after he came out of it we noticed his eyes were not looking the same and then we phoned the paramedics.”
Kodi was rushed into hospital where doctors attempted to resuscitate him.
Mr Phipps said: “They tried but his vitals just kept dropping. I said to my partner ‘we need to hold his hands and we just said stop, it’s just cruel.’
“It was the hardest decision I have ever made in my life.”
He added: “I know he’s at peace now but we miss him terribly. When he slipped away and left us it tore our world apart.”
Kodi died one day after his older brother, Kobi, had his second birthday.
Mr Phipps said: “The two of them were extremely close. Kobi wakes up every morning looking for him.
“We used to sing Twinkle, Twinkle Little Star, and now when we do Kobi blows kisses out the window and points to the stars in the sky.”
A crowdfunding page has now been set up by the family to help pay for funeral and memorial costs and to make a donation to the PMD foundation.
Mr Phipps said: “It is nice to see the support and all of the kind messages.”
Donations can be made at gofundme.com/ funeral-costs-and-pmdfoundation