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Milan’s story

August 26, 2022
Milan dressed in a Thor costume

Parents Phoebe and Zayne’s lives irrevocably changed in November 2020, when their five-year-old son, Milan, was diagnosed with a brain tumour.

“When we got the results, it was utterly crushing. You never expect it’s going to happen to you,” explains Phoebe. “We’d first spoken to Shooting Star Children’s Hospices in early 2021, and I was quite hesitant, but now knowing all I do I feel so strongly about getting the message out there about how they help families live a life you’d not think possible.”

In June 2021 the family were told Milan only had a few weeks to live. “We decided we wanted him to be at home. That’s when we met Vikki, who completely changed our lives in another way,” smiles Phoebe.

Vikki, from our Family Support team, visited the family home to do memory making and explain more about the hospice. “She told us we could visit, use the hydrotherapy pool together and if we wished, bring Milan to stay when the time came. I was absolutely amazed that first visit, it’s such an uplifting, vibrant space. There’s such a sense of calm and warmth.

“Milan and his younger brother Eden loved using the pool. To have the opportunity to swim and have fun together is a memory we’ll treasure and are so thankful for it,” said Phoebe. Against predictions, Milan made a good recovery, but the family were still urged to make funeral plans. “I’d no idea where to start, and the team were so brilliant in being open and informing us. We were actually happy to have the conversation, as although difficult and living off hope, I’d accepted his likely prognosis so being able to speak openly really helped.

Our Community Nursing team also began supporting the family in their home. “His condition started to deteriorate in September, so we had nurses from the hospice and hospital everyday at home, meaning we could ask questions as we thought of them. Milan loved to see them, and it never felt as if they were intruding. They got to know both boys and included Eden, which has served so well since Milan died, and they picked up on things we needed as a family,” said Phoebe.

Milan died aged six, on 21 November 2021. “He was at home when he died, but knew we wanted him to come to the hospice to the bereavement suite afterwards. I can’t even begin to explain how precious that time is. Everyone was amazing in that moment, interacting with us so gently in the hardest moment of our lives. I can’t thank them enough for what they’ve done for Milan and my family.

“Since Milan has died, I’ve felt able to pick up the phone should I need anything, I know they’ll understand even the silliest things. I lean on the hospice for Eden, he’s got a very strong connection and feel it’s a way he can remember his brother – soon he’ll be doing some therapy at the hospice. We attended our first Memory Day this year and it really helped him process his emotions.

“The support we’ve had has been unwavering – I was 20 weeks pregnant when Milan died. I’d hardly told anyone aside from some nurses, as I didn’t want Milan’s final moments taken away. Just before I gave birth, I felt at my lowest, but knowing I could call, and that we have support for three years made me feel so settled. I’d like to think within that period I’ll have the tools to equip myself for the rest of my life. I wouldn’t have coped without Shooting Star Children’s Hospices.

“They’ve allowed us to navigate through death in a very positive way – which may sound difficult to understand but it’s how I feel. Whilst death is very traumatic and the saddest thing I will hopefully have to go through, they have allowed me, and my family, to go through it in a much lighter way that I never thought was possible and I will be forever grateful.”

This story is from our Winter 2022 edition of Shine. Read more from the digital version here. If you’d like to receive our printed Shine magazine, which comes out twice a year, these are sent to everyone who has made a donation within the last 12 months, and opted in to receiving post.