Sunday People

BRAVE FAMILY WHO LIVE Two of our kids have died from a rare heart condition & the other 6 could go at any second. They’re all a...

- By Grace Macaskill

THE Underwood family live every day as if it is their last – because they know it could be.

Doting parents Maggie and Rob have lost two children in three years to a rare heart condition.

And now they live with the knowledge that it might claim the lives of their six others at any time.

All their children have inherited a ticking timebomb which could cause their hearts to explode, even though the parents do not suffer from it themselves.

The Underwood children have left medics astounded that so many siblings suffer from a genetic condition so rare there are fewer than 200 cases in the UK.

This time of year brings back memories of the loss of daughter Charlotte at 16 and Craig, who was 17.

Both died suddenly from little-known vascular Ehlers-Danlos syndrome, yet the rest of the family are determined not to dwell in the shadow of the condition.

Maggie, 44, said: “When we were first told the children could all die young I was heartbroke­n.

“There are no words to describe it. It’s like being in a dark hole. There were a lot of tears and it was hard to pick myself up again, but it’s something that strangely you learn to live with.

“The enormity of it is almost too much so we don’t spend our days moping around, talking about ‘what ifs’. We want to enjoy what family time we have.”

The deaths of Charlotte and Craig were put down to sudden death syndrome but tests later showed their siblings all had a condition they had never heard of.

The family were told Christophe­r, 25, Caroline, 24, Carrick, 19, and Cameron, 17, were at risk of early death because their hearts could rupture.

Mitchell, six, and Poppy, five, will not be tested until they are teens, when the condition rears its head. But doctors have warned they are also likely to carry the gene which causes the problem.

Amazingly, at the Underwoods’ home in Redditch, Worcs, life goes on as normal. Youngest son Mitchell runs around playing hide and seek behind the sofa while sister Poppy colours and talks about her teddies and dolls. But a poignant nt note is sounded as Maggie and Rob b talk about the pain of losing Charlotte te five days before Christmas in 2010 – and Mitchell suddenly pipes up: p: “I was waiting to be born when she he died.”

Maggie ie says they have explained to the little ittle ones how their big brothers s and sisters have “poorly hearts” and t r i ed t o keep Charlotte otte and Craig “part of us”. Maggie, aggie, who was as 35 weeks pregnant with ith Mitchell when Charlotte died, says: “She went so sudde suddenly. “Charl “Charlotte complained of feeling p poorly and the doctor suspecte suspected mumps. “Next day she was struggling for breath and said her chest wa was sore. As Rob called 999 she stopped breathing and I had to give CPR as the operator talked ta me through it – it was just a awful. “The pa paramedics took her for resuscitat­ion resu at hospital but sh she never made it. “I will w never forget the moment mom one of the doc doctors turned to us an and said, ‘ You need to call it, you need to tell us to stop working on her’.”

The couple were told Charlotte had died from a heart-related condition and, with the arrival of Mitchell, were forced to try to get on with their lives.

But in honour of Charlotte – “a real Daddy’s girl” – they began raising money to put defibrilla­tors in local schools.

Three years later, in 2013, Christmas was also shrouded in tragedy when Craig’s heart exploded as he walked to a youth club on December 10.

He was still alive when he was taken to hospital but he could not be saved.

Tearful Rob says: “Craig called an ambulance himself. He was saying to the controller, ‘Please find me, I’m going to be with my sister’.” On December 5, 2015

Newspapers in English

Newspapers from United Kingdom