Little Stars 2026
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NI Children's Hospice
This year's Little Star is Lottie, the 19-month-old daughter of Chelsea King and Ben Orr. Lottie has complex needs, after she was born with a rare genetic condition.
Chelsea and Ben said: “The Hospice nurses really have been our lifeline. We couldn’t be doing this journey without them.”
As the only children’s hospice in Northern Ireland, we support hundreds of families like Lottie's every year. With growing demand for our services, your support matters more than ever.
Donate today to our Little Stars Appeal!
This Christmas, support local children like Lottie!
For Chelsea and Ben, life is filled with challenges they never imagined – but also with precious moments of joy they treasure more than ever.
Lottie lives in Whitehead with her parents and big sisters Lily-Beth, 11, and seven-year-old Evie. She was born with a rare genetic condition, a TUBA1A mutation and Lissencephaly Type 3. She has global developmental delay, is non-verbal and also blind with significant hearing difficulties. Yet, as Chelsea says, Lottie is a happy little girl.
“Lottie loves cuddles, despite all she has been through, she has a happy life, with lots of smiles and laughter.”
Lottie’s journey began with uncertainty during pregnancy. At their 20-week scan, Chelsea and Ben were shocked when doctors raised the possibility of a serious genetic condition and repeatedly asked if they wanted to consider ending the pregnancy.
“It was the most cruel time of our lives,” says Chelsea. “We just couldn’t believe what was happening to us. We just wanted her so much.”
Help us continue to be there for more families like Lottie's by donating today
For the final 17 weeks of pregnancy, they were warned that Lottie might not survive long after birth. It was during this time that Children’s Hospice was first mentioned.
“At the time, we didn’t really know what the Hospice did,” says Chelsea. “We just thought, ‘So our child’s going to die.’”
But after meeting Children’s Hospice Nurse Judith McKibben and visiting the Hospice, their understanding began to change.
"We realised it was more than just end-of-life care,” Chelsea says. “They provide so much more support and help for families.”
Lottie spent much of her first year in hospital. At one point, her restricted airway was so severe that doctors feared she would not survive. After Chelsea researched the options, Lottie underwent a complex operation to help her breathe.
“It saved her life,” says Chelsea. “She’s sitting in our house today, happy as Larry!”
“But that constant fear of ‘Is this finally the day of saying goodbye to our daughter?’ remains even now,” says Ben. “It’s always there.”
“We just try to take it day by day and appreciate being in the moment,” adds Chelsea.
After many long months in hospital, the family spent precious time together at Northern Ireland Children’s Hospice before bringing Lottie home. Their stay at Horizon House gave them the chance to learn how to care for Lottie outside hospital, while knowing expert support was close by. It also gave them something they had been missing: the chance to simply be a family. One of their favourite memories is Lottie’s first swim in the Hospice pool.
“It was a landmark moment,” says Chelsea. “Being able to go swimming was something normal that we had taken for granted before Lottie came along.
Lottie also loves the sensory room and is surrounded by nurses who have become a trusted part of the family’s life.
Lottie requires a complex routine of medication, chest physiotherapy and suction, and sometimes needs eye drops every hour.
The Hospice nurses treat Lottie like their own,” says Ben. “They absolutely dote over her. It’s like a home away from home for Lottie. When Lottie’s at the Hospice, those couple of days are the only time where we can fully switch off and focus on other things.”
For Chelsea, Hospice at Home provides another vital lifeline.
“The nurse looks after Lottie, which allows you to get on with all the other tasks around the house"
"The nurse will also sit down and have a conversation with me and make sure I’m listened to.”
The support extends to Lily-Beth and Evie too. They have enjoyed sibling activities and the Hospice’s summer scheme, meeting other children who understand what it is like to have a brother or sister with additional needs.
For Chelsea, Horizon Tots has been particularly special.
“I’d been to other mums and tots groups with Lottie, but it just didn’t fit. I couldn’t get that bond with the other mums,” she says. “Then I found Horizon Tots, the Children’s Hospice sessions for parents and our little stars. Every time I came out, I felt full of adrenaline because I was connecting with mums who understood it.”
For this family, Children’s Hospice is about so much more than medical care. It is about understanding, friendship, respite, memories and moments of normality.
And every day, Lottie reminds her family to find joy in the smallest things.
“This journey has definitely opened our eyes to the world. It has made us appreciate life.”
“The Children’s Hospice nurses do so much more than just look after your child,” adds Chelsea. “They support your whole family.
“The Hospice team have truly been our saving grace throughout this journey. The care, compassion and love they show our whole family means more than words could ever express.”
This Christmas time, help us continue to support local children like Lottie, by giving the gift of care.
You can donate now to help NI Hospice continue to be there for more families like Lottie's.
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