A grieving couple has launched a new charity just weeks after the death of their son in a bid to prevent others suffering every parents’ worst nightmare.
Two-year-old Rocco Hunter died from Sudden Infant Death Syndrome (SIDS) after he suffered a tragic febrile convulsion while asleep – a seizure brought on by high fever.
He was having an afternoon nap upstairs at his Castle Acre home, when the seizure caused him to choke on his own vomit.
Mum Kim was downstairs at the time, with a monitor to detect noise turned to full volume, but Rocco didn’t make a sound.
“I was only feet away, downstairs and heard nothing. To think my boy was dying right above me is absolutely heart shattering,” she said.
Now Mrs Hunter and her husband Andrew, have launched Rocco’s Legacy to raise awareness of the rarer complications associated with the common childhood convulsions.
They also want the charity to raise funds for seizure motion monitors to distribute to parents who have children with a history of previous seizures, like Rocco, and high-tech fever alarms that alert parents to a childs’ rising body temperatures during sleep.
The charity was launched 24 days ago, just days after Rocco’s death on July 9, and more than £6,700 has already been donated to the cause.
Mrs Hunter said many parents are not aware that almost one in 20 children will suffer at least one febrile convulsion before they are six. They are triggered by a high temperature brought on from illnesses as minor as a common cold, and most of the time they are harmless, with no lasting medical problems. But some infants have a much lower tolerance than others.
She said: “A lot of parents are told febrile convulsions are very common and nothing to worry about, and in the majority of cases that is true, but for a small percentage of children that isn’t the case.
“Some seizures are more complex and require hospital treatment. What happened to Rocco was unfortunately quite rare.”
Rocco suffered his first mild convulsion when he was 14-months-old, but was back to his normal, happy self within a couple of hours.
He then had a second, more complex convulsion, just seven weeks before he died.
He was admitted to hospital for treatment, and given blood tests and scans to see if there was any underlying cause, but was discharged after three days with an all-clear.
Both the first two seizures had been in the daytime while Rocco was awake, so Mrs Hunter had been able to see them and take action.
But not being able to witness Rocco’s third and fatal convulsion, and do anything to help, is something she has struggled to come to terms with. “I blamed myself a lot and I’m only just coming out of that,” she said.
The couple, who say they have been “overwhelmed” by people’s generous donations, are already trialling hi-tech devices, such as the iFever intelligent thermometer, which is not available in the UK yet.
Anyone wanting to support Rocco’s Legacy can visit: www.gofundme.com/zc3vd8
Not currently available on the UK market, the device includes a child armband thermometer, a phone app which gives parents continuous temperature measurements and a high temperature alarm.
Rocco’s death has had a devastating impact on the couple, who also have a seven-month-old son called Shay. As he got bigger, Shay had moved from the couple’s bedroom into his own room before Rocco’s death, but they have now moved him back to sleeping with them for fear of history repeating itself.