“The Duchess has such a high profile and we’re so grateful for the way she supports and champions EACH” – families are thrilled to be part of an unforgettable day at Milton
The Duchess is Royal Patron of EACH and the eagerly-awaited visit came during Children’s Hospice Week. In addition to reflecting their joy at being involved on the day, the families also spoke glowingly of EACH.
The first family members to meet The Duke and Duchess were 15-year-old Chloe Bowes and mum Nadia, who were waiting at the entrance to the hospice. Chloe, who presented a bouquet of flowers, has a rare neurological disorder called Bilateral Perisylvian Polymicrogyria (BPP).
“I was so proud to be by my daughter’s side,” said Nadia. We were both very excited and appreciated the invite.”
Nadia says she is so grateful to have the support of EACH.
She says “Our relationship with the hospice was established when she was very young and I’m so thankful for this, it’s been a constant throughout her life and we’ve received many services over the years, ranging from day care and overnight stays to outings, activity days, information forums and home visits. The care and support is given with such warmth and kindness from the staff. It’s hard to put into words how appreciative we are and just how valuable the service is. It’s been a lifeline and helped me, as a parent, to find the strength to get through some dark times. It’s also provided some special times, wonderful experiences, joy and laughter. The staff have always been so kind and professional and displayed such genuine fondness and affection for Chloe. As a parent, I couldn’t ask for more and am so very grateful.”
The Duke and Duchess also met eight-year-old Willow Bamber, mum Michelle and dad Jamie.
Willow and sister Lily, 13, both have a severe neurological condition called Leigh’s Disease. Willow took part in an art activity with the Royal couple. The Duchess invited her to paint her hand and then pressed it down on a canvas. There was a cheer as she revealed her handprint.
“It was a real honour to have been invited and been a part of a very special day,” said Michelle. We’ve been coming here for the last ten years and accessed various services, from music sessions to wellbeing support. We’ve also attended Christmas parties, Dream Nights at Colchester Zoo thanks to EACH and we were also fortunate enough to visit Disneyland Paris, thanks to EACH and the Magic Moments charity. Milton is a special place to us and has made a big difference. Just having that support close at hand has been hugely reassuring, in case either of the girls regresses or has any issues. We enjoy attending family events and making memories and it’s also nice spending time with others going through similar things. To us, it’s a happy place and most people have the wrong idea and impression of what a hospice entails. They see it as somewhere people go to die, but we know that’s not the case. Jamie and I enjoy being there and our happy, beautiful and determined little girls also love spending time at Milton.”
While in the playroom The Duke and Duchess also met the Bayliss family – Hugo, mum Sarah, dad Paul and brother George.
Hugo has DiGeorge Syndrome - a condition present from birth that causes a range of lifelong problems. The seven-year-old lives with various associated issues, including chronic heart and lung disease, scoliosis and complex urological anatomy. He only has the use of one kidney and needs a feeding tube and pacemaker.
Sarah says that despite her early reluctance, Milton has become a key part of her family’s lives and she is hugely grateful for the support of EACH.
“Very early on we were offered support from the hospice,” she said. We were reluctant at first - being told your child has a life-limiting condition and would benefit from hospice care is hard to take in. However, once we started using the service, we understood how much we needed help and support from EACH. Hugo has been using the services since he was a baby, so many of the staff have watched him grow up and overcome so many obstacles. As a family, that support is invaluable. Even if it's for one night, it gives us, as parents, time to spend with our other son, George, without having to worry about what we need to be doing next for Hugo. We’ve also had the opportunity to do many amazing things that wouldn’t have been possible without the hospice. The service provided to us as a family is invaluable and I don’t have enough words to say how amazing and precious it is to us. The staff that look after us are not just Hugo’s nurses. They’re our friends and part of our family.”
As for meeting the Royal couple, Sarah added: “It was a once-in-a lifetime opportunity.
“As parents, it was an honour to meet our Royal Patron and to thank her for supporting EACH.”
In the main care area, the Duke and Duchess met three more families – the Carlsons, Halls and Carlins.
Libby Carlin has Bohring-Opitz syndrome - a rare genetic condition that affects the development of many parts of her body – and is a regular visitor to Milton. She was there with mum Kirsty, dad Gary and brother Jake.
“I was lost for words after being told about the visit,” said Kirsty. We were so excited and felt honoured to be part of such a very special occasion. The Duchess has such a high profile and we’re so grateful for the way she supports and champions EACH. The hospice has made a huge difference to our family and also the way we look at our lives now. I was so upset when we were told Libby needed hospice care and had all these sad, depressing images in my head. Then we went to Milton and it was so warm and welcoming. I felt happy. This was somewhere we, as a family, could make some amazing memories, meet other families and receive support. I’m not sure where we’d be today without EACH, from the phone calls checking in on us to the day care and fun days for Jake. They are a part of our life.”
James Hall has a life-limiting genetic condition called Vascular Ehlers-Danlos Syndrome.
It is an inherited connective tissue disorder and something the 12-year-old shares with mum Claire and older brother Henry, 15, both of whom were by his side at Milton.
Claire says the hospice has been a hugely important source of support down the years.
She said: “Milton has given us the chance to breathe, even be it just a short break from the 24-hour care James requires. It allows me to take a moment for myself and, more importantly, have some quality time with Henry. It means we’re able to do things with him that otherwise wouldn’t have been possible. The hospice is a space to breathe and the counselling we’ve received helped us deal with the past traumas of surgeries, as well as processing a new diagnosis and the news that it is a life-limiting condition. It’s also given us an opportunity to have hope again, through the many family and sibling days the hospice has provided over the years, allowing us to connect with others and feel we’re not alone on this journey. All these things have been the support cogs of a wheel allowing us to navigate the often bumpy, relentlessly exhausting and unpredictable road of caring for a severely disabled child. It’s given us opportunities to create and record many special memories, giving us light and renewed hope in our darkest moments. It’s also given us the strength to pick up our armour again as we battle to live long enough.”
Claire loved being at Milton for the visit of The Duke and Duchess.
“We were very excited to be part of the celebrations, especially during Children’s Hospice Week,” she said. Milton has made such a difference during our lives and it’s nice that such a bright, public light is being shone on its great work thanks to this very special visit.”
William Carlson met the Royals along with mum Helen, dad Steve and sisters Eliza and Cecily.
The 11-year-old has faced many complex medical challenges since birth and has a brain malformation called Lissencephaly,
Helen said: “William has a 24-night-a-year package of care at Milton. Due to his complex needs, he requires nurse-led care for overnight respite and nowhere else in the county could provide that. He stays at the hospice approximately three nights every six weeks. It gives us a break and allows us to do things with our girls, as getting out and about as a family is incredibly challenging and often impossible. Last time we went to Colchester Zoo for the day, and the time before that we went to Wickstead Park. Eliza accesses the sibling group and activities, and we try and attend as many of the social, fun activities as possible. Steve and I also access the wellbeing service, which has proved so helpful as the team there understand the complexities of life around a child with such health needs.”
Helen describes his hospice stays as “invaluable”.
“It's so important to us that he receives a high standard of medical care, from people who care about the children they are looking after, and we certainly get this at Milton,” she said. William is able to do fun activities such as arts and crafts and use the sensory room when he's there. Both our girls love spending time at the hospice and this is also really important to us. Our hope is that William's end-of-life care will be at Milton, so it's good we already have strong relationships with the nurses and carers there and that it's a place familiar and fun for our girls.”
Helen, Steve, Eliza and Cecily were all present on Thursday.
“We were incredibly excited and I couldn't wait to see Eliza's face,” said Helen. William's had a challenging few weeks, creating a lot of stress and worry for us, so having something like that to look forward to was amazing. Every time I stop and think about it, I have a big smile on my face. We absolutely loved watching the coverage of the jubilee so that made our excitement levels even higher. We'd never met a member of the royal family before and are huge fans of them and everything they bring to this country, so it was a real honour to be there.”
The Duke and Duchess were taken into the sensory garden to meet Henry and Jane Wright, along with daughter Clara.
EACH provided end-of-life care for four-year-old Douglas Wright, before his death in February 2018.
He had more than a year of treatment after being diagnosed with neuroblastoma - a rare type of cancer that mostly affects babies and young children.
EACH then supported parents Henry, Jane and Clara.
The couple have since spoken of their “debt of gratitude” to EACH and especially the staff at Milton.
“I’m the first to admit I was very wrong about what a children’s hospice entails,” said Henry. I thought it was all about palliative care and essentially where someone goes to die. I didn’t know about all the other things EACH provides. The team were there for us at the end and have continued to be ever since. If I picked the phone up tomorrow, I’m certain help would be at hand. We’ve been to support groups, had bereavement counselling and Clara has attended sibling days, like the trip to Clip n’ Climb, in Cambridge. There wasn’t anyone at school she could speak to, so the sibling groups gave her an opportunity to chat to other brothers and sisters who had experienced something similar.”
Jane is similarly positive and grateful for the care and support provided during such a difficult time in their lives.
She said: “The support from EACH was invaluable and we owe them a debt of gratitude we can never repay. They were there every step of the way and it’s not something we expected. At first it was alarming to be offered the services of a hospice when we were still hopeful treatment could cure Douglas. However, it was explained that children’s hospices don’t just offer end-of-life care. The hospices are eye-opening places but they’re certainly not depressing. Far from it. It’s not a clinical environment, like a hospital. The wonderful nurses visited us, often several times a day, and that support didn’t stop when Douglas died. They helped us with admin, thinking about funeral arrangements and then later with counselling and bereavement groups. That ongoing support has helped so much.”
Reflecting on Thursday’s special visit, Jane added that it was an honour to be asked to be part of such a special occasion and given the opportunity to meet royalty.
“As Royal Patron, The Duchess is a fantastic ambassador for EACH and that supports means so much to people like myself and Henry. We were so pleased to be there on the big day and it’s lovely for us to know Douglas is remembered, even four years on from his death.”
