The Hoad and the Roundhouse to turn red in support for Ulverston boy with Digeorge Syndrome
TWO of south Cumbria's iconic buildings will be lighting up red to show their support for a youngster whose parent's were told he was 'not compatible with life'.
Ulverston's Hoad and The Roundhouse Cafe and Hub in Barrow will shine red on Sunday for Ulverston youngster Maxen Shaw.
The six-year-old pupil at Dalton St Mary's has Digeorge Syndrome, a condition which is thought to affect one in 2,000 people.
Mum Caroline Shaw, 32, of Baycliff in Ulverston, said her son's condition was a syndrome not many have heard of and involved learning and behavioural problems, heart problems, hypocalcemia and a low immune system.
Mrs Shaw and her husband Thomas, 40, who run Shaw Plant Training Ltd together, already had their three children Jamie, now 15, Olivia 13, and Daniel nine, but nothing prepared them for health battles they would face with Maxen.
"We had no inkling at all," said Mrs Shaw, who moved to Ulverston from Sheffield.
"The only thing that was picked up on my scans was that I had excess amniotic fluid which we later found out can be a sign of the baby having a heart condition."
When he was three days old it was discovered that he had a heart murmur, and during a scan the doctor made a startling discovery.
Caroline said: "The doctor looked at the screen and said 'I don't understand it, he's not compatible with life', and those words completely turned our lives upside down.
The young tot was rushed to intensive care, but after a number of scans they were told it was not as serious as first thought and was allowed to go home.
Mrs Shaw said: "They said look, he has got a heart problem and you need to look out for blue spells and we were petrified.
"We were taking this newborn home, and we were experienced parents from having three other children with no problems, but bringing a child home that could potentially just die on us scared the life out of us.
"We didn't sleep at all. I was on one watch and my husband would cover the next watch to see if he would turn purple or blue and he would need to be blue lighted into hospital."
Maxen would finally get a diagnosis of Digeorge Syndrome after being admitted to hospital shortly after with 'ticks', which developed into a seizure.
However, there are approximately 180 problems that could present in someone with Digeorge Syndrome.
Mrs Shaw said: "November 22 is Digeorge Syndrome awareness day. The charity, The Max Appeal, asked people to contact their local council to get places lit up red.
"I thought I'd get in touch with the council and the Roundhouse Cafe and they agreed to do it.
"The community have been absolutely fantastic and we try to spread as much awareness as possible because it is a syndrome that is unheard of yet it is so common."
The Mail 17Nov2020