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Rays of Sunshine

Faye Axford, 38, from Essex, shares with us how Rays of Sunshine made her son Callum’s wishes come true

 

Faye Axford was almost 20 weeks into her first pregnancy in 2010 when she began feeling worried. “I have always been very petite but I noticed that my stomach had become really big and hard,” she says.

At her 20-week scan, she realised that something was seriously wrong. “The radiographer went out of the room and came back with several doctors. We were told they had found a problem with the baby and we needed a referral to King’s College Hospital in London. We were in complete shock.”

Faye and her husband, Carl, attended an appointment the following Monday, where
they were told their baby – Callum – had a congenital diaphragmatic hernia (a hole
in his diaphragm). Due to this, many of the organs that should be in his abdomen were in his chest, which had squashed his heart and stopped his lungs from fully developing. “Callum was unable to swallow any of the amniotic fluid as his digestive system had been compressed, which explained why I was so big. We were told we might need to terminate the pregnancy, but that they would do an amniocentesis (where a sample of cells from the amniotic fluid is removed and tested) to see if we could still go ahead. Waiting for the results was the longest two weeks of our life.

“Luckily, the test results ruled out other serious conditions. However, we were told that for Callum to have any chance of survival, I had to get to 32 weeks, so I was put on full bed rest from 20 weeks. At 26 weeks, I was showing signs of giving birth early, so they put a needle through my abdomen and drained two litres of fluid, which relieved the pressure. I was then admitted into hospital at 29 weeks, where I went into labour four times. Luckily, they managed to reverse this, and Callum was born at 33 weeks and was immediately whisked off to intensive care.”

“Callum was diagnosed with chronic lung disease and pulmonary hypolasia, and we nearly lost him several times”

At just three days old, he was given an operation where pig skin was used to repair the hole in his diaphragm. “He then spent eight months in intensive care. He was diagnosed with chronic lung disease and pulmonary hypoplasia – which means his lungs didn’t develop properly – and we nearly lost him several times. Thankfully, we were eventually allowed to take Callum home, on oxygen and with a feeding tube attached.”

However, over the next few years, Faye noticed Callum wasn’t hitting any of his developmental milestones. “He was very slow with his speech and physical development, starting to walk only when he was four years old. We were consistently told it was just due to him being in intensive care for so long, but I knew there was more to it than that.”

When Callum was six, the family were finally given a referral to Great Ormond Street Hospital, where he was diagnosed with cerebral palsy – a lifelong condition affecting movement and coordination. The scan also showed Callum had neurofibromatosis type 1, a genetic disorder causing usually non-cancerous tumours to form along the the nerves – which in Callum’s case had caused tumours to develop behind his eyes. “I was prepared for the diagnosis of cerebral palsy, as Callum had many of the classic symptoms, but to be hit with another serious condition was just awful.”

Today, Callum, now 10, needs regular hospital appointments to monitor his eyes and diaphragm, and scan for any new tumours if further symptoms arise. He also requires a variety of medications including inhalers, nebulisers, home oxygen to help with his breathing and steroid tablets on hand for if he catches a virus or infection. Due to struggles with his mobility and balance, he has a lot of physiotherapy, and one-to-one support at school.

“He also finds it very difficult to chew and eat,” Faye adds. “However, he is very determined and positive and doesn’t let his health conditions get him down.”

Shortly after Callum’s diagnosis, Faye heard about the charity Rays of Sunshine – which grants wishes for seriously ill young people and their families – and decided to put Callum forward for a wish. In January 2018, she got a call to say the charity would be sending them to Disneyland Paris that summer. “It was Callum’s number one wish! Then in March, we got another call from the charity saying that as Callum wasn’t getting his wish granted until the summer, it had also arranged for him to meet the Arsenal team in April. He was absolutely thrilled as he is a huge Arsenal fan.

He sat in the box and watched the game, was given the kit, and met the players and got their autographs. It was more than we could ever have asked for.”

“They made us feel like VIPS”

The family flew to Disneyland Paris for Callum’s eighth birthday in July 2018. “It was the best birthday present ever, and we had an amazing three days going on rides, watching shows and having breakfast with the characters. The charity arranged for us to stay in a fantastic hotel and gave us a special pass so we didn’t have to queue for anything – we felt like VIPs the whole time.”

“The charity has given us so much and brought us so much joy, and it’s a part of our family now”

Since their holiday, the charity has stayed in touch with the family. “We’ve been invited to its Christmas parties and Callum sang with its choir on stage with Alfie Boe last year. We have also attended the hospital’s charity activity days, and it arranged for us to go to a birthday party it was hosting for the Arsenal player Mesut Özil. Callum was absolutely made up when we were then invited round to his house! It’s really been like a dream come true.

“The children and siblings the charity supports go through so much, so to help them to have these amazing experiences is just incredible. The charity has brought us so much joy – I don’t think they’ll ever understand just how much it’s meant to us.”

 

Rays of Sunshine Children’s Charity Christmas magic

TOTAL RAISED: £11,945

Christmas is a magical time of the year for every family, but for a family caring for a child
with a serious illness it is even more poignant, and creating memories is even more precious. Rays of Sunshine will use the money raised in The Candis Big Give to help children living with a serious illness and their families to create precious memories at Christmas. The money will grant children’s wishes involving their entire family. These can be as unique as the children themselves – from being a princess, to enjoying a magical family holiday to Lapland. The money will also help to host six Christmas Hospital Activity Days – including bedside performers and the delivery of Christmas gifts – to entertain and reduce a sense of isolation for children and families having to spend time in hospital over the festive season. Visit raysofsunshine.org.uk

 

How Buying a Subscription Helps – In 2020, Candis Club will donate at least £250,000 from members’ magazine subscription revenue to health charities taking part in The Candis Big Give.

Any additional funds will go tocharities at the discretion of the General Committee of Candis Club.

 

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