Parents of baby Archie Crute mark launch of hospice’s ‘Dedicate a Daisy’ appeal

The parents of baby Archie Crute who died earlier this year have dedicated a daisy in his memory at Hope House Children’s Hospices.

Dan Crute and Becky Davies, from Wrexham have been fundraising for the charity since their 17-month-old son Archie Crute died in March.

They are one of the first to receive the hospice’s new special daisies.

Dan and Becky will get a daisy for their home as well as having a daisy displayed at Hope House for other children and families to see.

The stainless steel daisies have been made by Red Dragon Metal Art are will be available for families and supporters to purchase in July for a suggested donation of £15.

Everyone who dedicates a daisy will be able to leave a special message which will stay with the daisy while is displayed at the hospices throughout August.

“We are delighted to be able to dedicate a daisy for Archie, we will have one daisy at home and know that the other will be on display at Hope House, a place so dear to our hearts,” said mum Becky.

Archie was diagnosed as a baby with Menkes disease, a condition that affects around one in every 300,000 babies.

“When he was born it was the most amazing thing and we had been waiting for that moment for so long,” said dad Dan.

“Everything was normal for a few months after we bought him home, but after about six months we noticed Archie wasn’t really gaining weight and we started to notice he was a bit slow in his development – like struggling to support his head and being a bit floppy.

“At that point, we knew there was something not quite right.”

Archie needed many visits to the hospital and after numerous tests was eventually diagnosed with Menkes disease.

“We were told there was no cure and that Archie’s life expectancy was about two to three years. It was surreal. Our life turned upside down,” said Dan.

After spending a few weeks in hospital after his diagnosis, Archie and his family were introduced to Hope House.

“It was just like bringing a newborn home again,” said Dan.

“Very quickly we had to learn everything all over again. We needed to learn how to specially feed Archie, give him all of his medicine accurately and just generally care for our little boy.

“We were guided through all this by the amazing staff at Hope House.

“We were able to stay at the hospice with Archie. He was our baby boy and we didn’t want to leave him. But knowing he was well cared for by the amazing staff at night meant we could sleep properly.

“The rest was incredibly important. With a normal healthy child, you can generally give them to family members and grandparents for a couple of nights to look after, but when your child is poorly and needs medicine regularly and accurately it becomes much trickier.

“He didn’t need babysitters, he needed nurses 24/7, and that is ultimately what we became.

“But the staff at Hope House made our lives so much easier. We could almost switch off from a few things while we were there. It meant we could spend the time getting to know Archie and everything he needed.

“Archie would not have lived as long as he did if it were not for Hope House.

“Not because of his condition, but because we would have been way more tired and exhausted, it would have taken its toll and we would have made more mistakes with his care.”

The family had regular stays at Hope House which also allowed them to spend time together and make memories while Archie was receiving care.

“Archie loved the sensory room, he’d fall asleep with us in there,” said Becky. “Although he couldn’t communicate you knew he was comfortable cuddled up to someone and knew he could feel the love, and he just radiated it right back. He loved being cuddled.

“He loved the hydrotherapy pool at Hope House. He was so relaxed. He loved the lights and the sound. The pool was so incredible for him because he couldn’t support his own weight, so it fully relaxed him.”

When Dan and Becky were told that Archie needed end of life care, they came back to Hope House where they could use the Snowflake Suite, a place where families can spend time with their children and say goodbye.

“When we knew the time had come, Hope House was there for us,” said Dan.

“We were able to just be in these peaceful surroundings and spend time with our boy.

“Using the Snowflake Suite gave us this extra bit of time with him. We could get on the bed with him, he had all his teddies, his pictures, his lights. It was beautiful.

“There are no words to describe what you go through at that time, but without what Hope House could offer us we wouldn’t have had the time with our boy we did. Hope House is like a family to us now and we will give back what we can and being able to dedicate a daisy in his memory is so lovely.”

If you would like to dedicate a daisy in memory of someone special, to our children and families or even to celebrate a special occasion then please visit www.hopehouse.org.uk/daisy or call 01691 671671.