When Cameron was born in 2007, her family was thrilled to welcome her into the world. It was a magical time – but it would be short-lived.

Cameron's grandparents and legal guardians, David and Denise, have shared her story"

Receiving a diagnosis

Within a few hours of her birth, after her first feed, Cameron started vomiting and she couldn’t keep anything down. The panicked family rushed her to the hospital, where it was discovered she had malrotation of the gut. Her stay in the hospital lasted weeks; her parents learned that her feeding issues would be lifelong, and she would have to be peg-fed going forward. With an official diagnosis, she was finally discharged, and they hoped they could return home and recapture some of the magic they felt when she was born – and for a time, it seemed they had.

“She never cried,” said David, her grandad. “Her mum was really pleased at first – you hear all these horror stories about how much sleep you lose as a new parent, yet here was Cameron who just laid there quietly and seemed totally content.” As the days went on, though, the family’s concerns started to grow; Cameron remained that same quiet, almost unresponsive baby, totally unlike anything the family expected at this stage. Something wasn’t right.

A trip to the GP confirmed their fears, and Cameron was referred back to the hospital for a series of tests and appointments. Eventually, it was discovered that Cameron was suffering from a unique chromosome deletion; so rare that it’s the only recorded case on the worldwide database for chromosomal abnormalities. The family were devastated.

“Cameron’s parents separated, and for a short while, her mother was solely responsible for her care. Due to the complexities of Cameron’s condition, however, and the total uncertainty of what the future would hold, she didn’t feel capable of maintaining that care,” David said. “One weekend, Cameron came to stay with Denise and me to give her mum a break, and when Monday rolled around she was still here. It wasn’t long before we were applying for legal guardianship.”

Cameron's grandmother, Denise, looks at her smiling.

David and Denise’s lives were turned upside down by this new arrival in their household.

“We’ve already been through the parenting process once – and having Cameron wasn’t like having any other baby,” Denise said. “It changed our entire lives literally overnight. From the day she arrived (and Cameron is 15 now) we haven’t had one night where we’ve been able to sleep through until morning.”

While the family struggled to come to terms with this new way of living, complications with Cameron’s health were constant and relentless; her missing chromosome caused severe learning difficulties, as well as an avalanche of other conditions. She began to suffer from seizures, she had dislocations in both elbows, and over time she developed a considerable curve in her spine. She is also non-verbal, and in 2019 was registered blind.

Being referred to Demelza.

“There was so much to deal with, and we didn’t have proper support. Friends started dropping like flies; you cancel plans one too many times, and eventually, you stop being invited in the first place,” David said. “They didn’t understand how much planning goes into looking after Cameron – we literally have spreadsheets when we go on holiday, for all her medications and food regime. We can’t do anything in the spur of the moment, everything has to be accounted for. Things that they take for granted – a trip to the shops, dinner at the local pub, a week-long holiday – can be nearly impossible for us.”

“Eventually one of our friends recommended we get in touch with Demelza; they knew a member of Demelza’s team and told us all these amazing services we might be eligible for, not just end-of-life like you might expect. We’d just moved house and couldn’t believe how close they were, their Kent hospice was practically a 10-minute drive away! We went to work on getting a referral as soon as possible.”

Tailored care for the family

For David and Denise, once they’d secured that referral to Demelza in 2015, it was as if the clouds had parted; the family soon started having regular care at home sessions to give David and Denise a break. “A Demelza nurse comes once a week and takes care of Cameron for a few hours. She’ll read her favourite books, play on the iPad with her, whatever Cameron wants to do and responds to,” Denise said. “It was incredibly hard to trust anyone alone with her because her needs are so complex, but Demelza put us at ease so quickly; they make their services fit your family, not the other way around.”

“For example, Cameron takes a long time to warm up to people and she can be really closed off until she feels safe,” David went on, “so having a different Demelza nurse each week was a bit of a struggle. We mentioned this in passing to the care team one day, and before we knew it we had the same nurse – Vicky – coming in every week. She’s been doing our care at home sessions for a few years now, and the difference you see in Cameron is night and day. She practically launches herself at Vicky when she comes in for her sessions now, she’s so happy to see her. That little change made a world of difference to our family, and it’s just one way Demelza will tailor things for your family.”

Care at home

For David and Denise, Cameron’s care at home sessions means they have a few hours a week where they can enjoy a bit of time to themselves – knowing Cameron is not only being cared for by a skilled professional but that she’s having fun as well.

“For us, those few hours mean the world,” Denise said. “We’ll sometimes book a table at the local pub and have a hot lunch; it sounds silly but such an ordinary thing would be so much more difficult without Demelza. I think it’s helped us stay sane, especially with COVID-19 and how isolated we were for a while. Those little moments of respite, eating our Sunday lunch and just enjoying each other’s company, add up to something really special.

Demelza's partnership with Millwall FC

Demelza is also partnered with Millwall FC who are aiming to raise £50k for the charity in 2022; something that caught David and Denise’s eye as lifelong Millwall fans. “We were lucky enough to be offered free tickets to their matchday recently, through Demelza, and what an opportunity that was,” David said. “It’d been years since we’d made it across to the Den, due to Cameron’s condition, but being offered the tickets through Demelza meant that everything was taken care of for us. It was a credit to the charity (and Millwall) because on the day, things couldn’t have been easier – we had reserved disabled parking, disability-friendly seating, we had access to a quiet room to get Cameron changed and medicated… We even got to see some footage of Cameron up on the big screen during the match. I’ve loved Millwall all my life and to get the opportunity to share that experience with Cameron was indescribable.”

The nature of Cameron’s condition means the future is uncertain; infections are common and as her case is so rare, it’s unclear what other complications might arise later down the line.

“We know that the transition out of children’s hospice care is looming on the horizon as well when Cameron turns 18, which is a totally different beast from what we’ve experienced so far,” Denise said. “But we’ve already had conversations with Demelza about what that process might look like, and we’re being supported. It’s a long road still ahead of us, but having that safety net makes a big difference.”

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