As people around the world continue to adjust to the new normal of social isolation, its effect on the parents of seriously ill children is continuing to present obstacles and difficulties as families do their best to continue round-the-clock care from their homes.
Concerned about the impact the global coronavirus pandemic is having on the many organisations he works closely with, Prince Harry arranged a personal video call with some of the families he has come to know through his patronage with WellChild, a UK–based charity that gives children and youths the best chance to thrive with support at home instead of hospitals.
On 9 April, the Duke of Sussex dialled in to a Zoom chat from his home in Los Angeles to speak with mother-of-three Leanne Cooper and father-of-four Craig Hatch about some of the new hurdles they are facing during the Covid-19 crisis. WellChild nurse Rachel Gregory, who supports children who require long-term ventilation, and the charity’s CEO, Colin Dyer, were also on the call.
Having worked closely with the children’s charity for more than 10 years, Harry had already met all the callers at different events and meetings, including the annual WellChild Awards, which he and Meghan most recently attended in October 2019. And while it was “great to see so many familiar faces,” he said, his concern for the new challenges of social isolation and the impact that the current situation is having on the complex medical needs of their children were the main focus of the call.
“The resilience and strength that you guys have shown is absolutely incredible and you must never ever, ever forget that,” Harry told the parents. “And, of course, there are going to be hard days, I can’t even begin to imagine how hard it is for you guys, having just one kid [myself]—an 11-month-old—so to see what you are doing on a day-to-day basis, I have so much respect for every single one of you.”
Leanne Cooper, whose 13-year-old daughter Sophie has cerebral palsy, dystonia, scoliosis, and multiple complex medical needs, told Harry about the changes they have had to make. “Sophie needs a high level of care and we need to give her that,” she said. “The virus aside, that doesn’t stop, we still have to give that volume of care 24/7, seven days a week. And now with the virus on top of everything else, with us in isolation and lockdown, I can’t really put into words just how scary a time it is.”
She went on to describe how the family are now living in constant fear due to ventilators being in short supply and the potential struggles ahead to get some of the 45 medications Sophie has to take every day. Sophie’s twin sister, Erica, has a milder form of cerebral palsy and autism, which means that Leanne and her husband Craig’s hands are full from the moment their day starts. Their efforts are complemented by Rachel Gregory, a WellChild nurse who covers three counties in the United Kingdom, including Sophie’s home in Lincolnshire.
“Rachel has been a lifeline to us,” said Leanne—who first met Harry at the WellChild Awards in 2011. Rachel, who is based at Queen’s Medical Centre in Nottingham, added: “These children need round the clock care, 24 hours a day. You can’t expect parents to do that on their own. They have to open their doors at this vulnerable time to external carers, which is a huge concern for them.”
Harry commented, “On a day-to-day basis, it’s incredibly challenging for all you guys, but now this has taken it to a whole new level. … You are a shining example of being super parents. Spinning so many plates and juggling so many balls at the same time, it’s amazing.”
For Craig Hatch, who cares for his 21-year-old son Fraser, who has cerebral palsy, epilepsy, neuromuscular scoliosis, osteoporosis, a chronic lung disorder and type 1 diabetes, the entire family are working together to make his care plan work as they can’t take the risk of letting a carer visit the home. “We are frightened, because we know that if the virus gets in our house, and if Fraser contracts the virus, the implications are quite severe,” the 55-year-old said, noting that even he recently had to self-isolate from the family for seven days after experiencing some of the symptoms of the coronavirus.
Though he has a full-time job, Craig and his wife, Elizabeth, dedicate several hours each morning and evening to help Fraser, as well as give ongoing support throughout the day. And while they have friends helping with the delivery of medication, the couple continue to worry about supplies being available. “It’s tough,” he said of their daily challenges, which include “the feeling of isolation and combination of tiredness.”
For parents and carers like Craig, Leanne, and Rachel, the worry about supplies—such as personal protective equipment (PPE), medicine, and cleaning products—is ongoing. Even normal communication with health teams has proven difficult for many families in recent weeks. WellChild CEO Colin Dyer tells Bazaar, “It is clear that the overwhelming message from families caring for seriously ill children at home is that they have become even more hidden and isolated than they already were—and are struggling to be placed on ‘vulnerable’ lists and therefore, access deliveries for supplies including food, cleaning and sanitising products, and PPE.”
At present, for the British government to consider a child or young person vulnerable, they must either have a social worker or be under the age of 25 with an education, health, and care (EHC) plan. But, as many families across the country know, vulnerability comes in many forms. It’s this reason, among many, why Harry was eager to raise awareness of the issues that WellChild, which is totally reliant on voluntary funding, is currently dealing with. Though they already have forecast a 60 per cent fundraising income loss (due to cancelled or postponed fundraising events), their work is needed more than ever before.
“We all saw this as a great opportunity to shine a light on the issues facing families caring for seriously ill children right now,” Colin says. “The impact of ensuring that everyone understands just how vulnerable these families are shouldn’t be underestimated and the duke’s role is vital to that.”
“The recovery is going to take a long time for everybody, especially within the charitable sector and charities like WellChild,” the prince told the group. “In the immediate term, it’s about supporting each other. If the equipment is hard to get and it’s hard to visit people, then just being able to speak to each other, whether it’s on Zoom or FaceTime or whatever it is, just to be able to communicate and draw some strength from other people, I don’t know how you guys feel, but presumably, some days are way worse than other days and some days are okay.”
With an end date for the current lockdown still unknown, services like WellChild’s Family Tree Network are providing much-needed support for parents of seriously ill children. The online forum is a place for parents and carers to share advice or simply swap tips about managing stress. “Is there a way you are able to manage this stress?” Harry asked, “I don’t always practice what I preach,” laughed Leanne, “but read a book, go running, have a bath. … Remind myself to step away and make sure I’m enjoying quality time in the family, everything just seems to go back and I’m like, ‘I’m okay, we’re all right now.’ We might be throwing paint around in the garden, we might be making bread—just enjoying that quality family time. It’s an easy way to get away from the stresses and the worries of what’s going on out there at the moment.”
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Harry agreed. “You’ve got to celebrate those moments where you’re just on the floor rolling around in hysterics because of something that has happened,” he said. “Inevitably, half an hour later or maybe a day later, there’s going to be something that you have to deal with, and there’s no way that you can run away from it. But as long as you guys are looking after yourselves and looking after each other, that is the best you can do.”
He continued, “I think when you’ve been through hard times, you really come out so much stronger, not just for yourself and not just for your family but for other people as well.” The prince ended the call by asking for the children to join—and “cause chaos,” he grinned. “And certainly from a mental health point of view, if you’ve ever been through that and you want to make sure that no one else struggles or no one else goes through what you went through and it’s so nice to know you’ve got this community to share experiences and to just check in, because that at the end of the day is a really good place to start.”
Both Harry and Meghan are quietly working behind the scenes on ways they can help during the coronavirus pandemic. Harry is already working with partners of his sustainable tourism initiative, Travalyst, to better understand how they can aid in global recovery, including supporting communities. Yesterday, a spokesperson for the couple confirmed that they have pledged the money generated from their 2018 wedding broadcast, $113,000, to Feeding Britain, a hunger charity that provides families in need with food packages and hot meals. A source close to the couple tells Bazaar, “They have been working with, talking to, and supporting several organisations and charities that are responding to the pandemic—including groups they know well and new ones too.”
This article originally appeared on Harper’s BAZAAR UK.