“We didn’t really want to take another roll of the dice if we’re honest.”
Janine Price – and her family – know how to beat the odds.
It took 22 different medical professionals to diagnose their 14-year-old daughter Bex with a rare, life-threatening condition.
Now, three years on from when she was rushed to Great Ormond Street Hospital by ambulance, the family are facing up to the new risk posed by coronavirus.
Bex has pulmonary hypertension, which affects her heart and lungs.
In December 2016 she was so unwell she couldn’t even be given a general anaesthetic before emergency treatment to save her life.
The family, from Barry, south Wales, spent Christmas in hospital that year, and Bex now relies on intravenous medicine 24/7.
“I do think I’m one of the unlucky lot, but it’s okay for me now because it’s just become a thing and I’m okay with that,” Bex said.
“Since I’ve been on my medication I’ve been doing a lot better and I can do things with my brother – we play basketball a lot in the garden.
“But because of my condition, we decided to isolate quite a bit earlier than everyone else….and it’s making us go a little bit stir crazy.”
Mrs Price said: “We’ve been told the rarity of Bex’s condition genuinely makes her one in a million.
“This girl of ours has been prodded, poked and gone through what are quite frankly traumatic experiences, especially a brain MRI, and yet she continues to smile, be funny, be positive and live her very best life.
“Bex is our inspiration – she truly amazes us. Her brother is too. It’s an awful lot for him to deal with as well.”
Isolation for the Price family started early, on 13 March, as they were acutely aware underlying health conditions can be fatal at the best of times, let alone in a pandemic.
Mrs Price and husband Gavin prepare Bex’s life-saving medication in batches every few days, which helps to keep her arteries open and prevent heart and lung problems.
The couple had to learn the procedure inside out before she was allowed to leave the hospital.
“She has to wear a large pump that is infusing medicine into her 24/7, and there cannot be any interruption in that,” Janine said.
“We have quite a lot of medication stored in the house but you can only stockpile for so long.
“To give you some idea of the scale of that, typically between six and eight cardboard boxes will turn up when we have a delivery – and that was one of our first thoughts with lockdown – will the meds delivery turn up?”
Fortunately, they did.
“We know Great Ormond Street Hospital is working with our medical suppliers to ensure that everybody receives three month’s supply in the next delivery as opposed to the usual one month,” Mrs Price said.
Bex also needs regular blood tests which resulted in a makeshift ‘drive through’ experience recently.
“The Children’s Hospital for Wales arranged for us to drive in at the side of the building so a nurse could take blood, but do it quickly and then head back in via a fire escape to minimise the number of people we came into contact with,” Mrs Price said.
“When Bex’s glasses broke we couldn’t just go to Specsavers, we had to leave the glasses on the bench outside for them to be repaired and returned to us.
“When the dog became unwell the other day we couldn’t just take him to the vet we had to give him medication ourselves.
“Life has really changed and it’s the little things that are not so easy anymore.”
Both Janine and Bex’s dad Gavin are teachers at a local college and are juggling looking after the children, working remotely and keeping their students motivated.
Their son Sam, 13, is using isolation as inspiration for a video diary online, where Bex featured most recently as his makeshift barber.
He says he misses seeing his friends and not being able to just “pop to the shop” when he wants something.
Mrs Price said: “Sam is a complete and utter social animal – he has a fantastic group of friends, he’s into his football, he’s out all the time, so that was a real concern.
“You do wonder about whether this childhood summer is being stolen away from them.”
Wales in Lockdown is on Monday 20 April at 20:30 BST on BBC One Wales and on the BBC iPlayer.