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Bereaved family show support for Rainbows

Bereaved family show support to Rainbows

A young girl from Ashby has donated a care package to our Care Team, in memory of her brother.

Minnie (8) saved her pocket money to buy treats for the Care Team at the hospice who provided end-of-life care to her brother, Hugh, as a way of saying thank you and to show the families support for us during these difficult times.

Hugh had a rare muscle wasting disease which meant he didn’t even have the strength to cry. He died at the hospice when he was just five-and-a-half months old.

His parents, Cath and Mikey, have been pushing themselves to the limit by taking on a series of gruelling challenges. They have raised more than £6,800 for us to date.

“I dread to think what the whole thing would have been like without Rainbows,” said Cath. “I am hopeless at asking for help, even if I need it. At Rainbows, you don’t have to, everybody just knew what it was that we needed.”

On May 27 2015, three-year-old Minnie, welcomed her baby brother into the world. 

“It wasn't long before we suspected things were not all well,” said Cath. “Following some weeks of concern, a stay in hospital, numerous tests and endless days and sleepless nights of worry, Hugh was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. This is an untreatable, incurable genetic condition. We were told that it would be unlikely that Hugh would reach his first birthday.

“Through the devastation and grief, we still had Minnie and a severely disabled little boy to look after. We had to set the alarm to wake in the night to feed him and move him. He didn’t even have the strength to cry. 

“Our focus became to give Hugh the best, most comfortable and loving life that we possibly could and make happy family memories while he was still with us.”

SMA is a muscle wasting illness so Hugh found it difficult to move. But his parents noticed this improved in water. His face lit up in the bath, and also when the family visited Rainbows and used the Hydrotherapy Pool.

“At Rainbows, the four of us could go swimming. We were able to have fun,” said Cath. “The time we spent at Rainbows was a comfort amongst the upset, round the clock caring and overwhelming amount of medical appointments.” 

One of those appointments was to discuss Cath and Mikey’s wishes for Hugh's end of life care. They decided Rainbows would be the right environment for all of them.

In October 2015 Hugh became very ill and after a brief trip to A&E, he was transferred to Rainbows. 

“None of us expected him to make it through the first night there but our little man fought on for 19 more days until he finally passed away peacefully on 11th November 2015,” said Cath. “I struggle to put into words the many ways that Rainbows made a difference. 

“Ultimately, when we felt at our most helpless, the staff and services at Rainbows were there to help. Not only that, they knew how to help, without us even asking.

“When he died, he wasn’t taken to a morgue. We had the time and space and were able to visit him when we wanted to.

“Although she was only three Minnie remembers Hugh. She says that she wants to be a nurse when she grows up and live at Rainbows. She had a close bond with some of the nurses and play team.”

At the most difficult times, Mikey would go running from Rainbows. It was his way of coping. After Hugh died, Mikey entered the 2016 Rat Race Dirty Weekend - a 20 mile obstacle race - to raise funds for Rainbows. “I was so proud of him,” said Cath. “At the time, I felt so broken that I couldn't imagine ever having the energy and motivation to tackle such a mammoth event.”

But she did and with friends, she took on the 5k Pretty Muddy in July 2017, the Tamworth 10k in October 2017, then a Full Tough Mudder in May 2018. She then completed the Rat Race Dirty Weekend in 2019, a feat she thought she would never achieve.

“I trained so hard for it, I felt elated,” she said. “A few miles in, one of the marshals said, “Come on team Rainbows” and I realised what I was doing this for and the impact it had on me. Rainbows will always have a special place in our hearts and to be able to give something back is wonderful.”