'We're always on red alert' - How family of miracle baby Kaiden celebrate Christmas
PUBLISHED: 08:00 26 December 2019 | UPDATED: 06:40 27 December 2019
Christmas is often a balancing act for families - who try to juggle present buying with childcare, work commitments and preparing a festive feast - but this Ipswich family also has to consider the possibility of a trip to hospital if 21-month-old Kaiden Daley suffers a seizure - brought on by a condition which means he is missing nearly 20% of his brain.
Kaiden's parents, Amanda Harvey and Orrett Daley, have been told by doctors to plan their Christmas holiday as usual - even moving around his appointments to give him 10 days off from medical treatment.
However, the couple admit they cannot ever keep their eyes off the ball.
Kaiden suffers from potentially life-threatening fits due to his condition and the family have to be careful - in case the energetic, smiley toddler becomes unwell.
Miss Harvey said: "We have been really looking forward to Christmas this year.
"All the doctors say treat it as normal, don't do anything different than you would do. But it is difficult.
"We are always on red alert - even over Christmas. If he has a fit we will call an ambulance and go straight off to hospital, no matter if it's Christmas Day or not. We have to be ready for that."
Kaiden is coming into the festive period off the back of life-changing CIMT (constraint induced movement therapy) which helped stimulate movement in the youngster's right side - which has been restricted since birth because of his condition.
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He is also on his longest run without a seizure, although his parents are nervous about jinxing his better period of health.
"I really, really don't want to jinx it," Miss Harvey added.
"I think it's because we have a bit more control over his medication, and because he is a little bit older.
"We are getting better at seeing the signs I think, and we are better at managing his medication which is low for someone his size, but because he is growing it's important to keep the right level.
"Sometimes I see him shiver, as if someone has walked across his grave and I wonder if it's the start of a seizure and the medication just kicks in to stop it."
The family have decided to stay in Ipswich this year, just in case Kaiden has another medical episode. They are having a small family celebration with all the usual Christmas traditions, but could be at Ipswich Hospital within minutes if needed.
Going into the new year, Kaiden is expecting to travel back up to Manchester to have a top up on his CIMT.
Following the previous £7,000 treatment, Kaiden took his first steps - and the family are hoping a second round of treatment will help the youngster in later life.