Mickinley has spent more time in hospital than most of us do in a lifetime. The happy and sociable teenager has endured almost 30 serious operations, but you’ll rarely see him without a smile on his face. Mum Tammy and dad Mick share the life-changing journey that led them to Bluebell Wood Children’s Hospice: 

“Mickinley was very poorly from day one but we had no idea of the extent of the hardship he’d have to go through,” said Tammy.

“By the time he was two-years-old he’d had surgery on his eyes to remove cataracts and a serious operation on his stomach which meant he then had to be fed through a tube.”

Six months later Mickinley was diagnosed with an extremely rare condition called Lowe Syndrome, a genetic condition with no cure that affects every aspect of his life.

“It was a complete shock when we found out,” said Tammy.

“It’s such a severe condition – it really was one of the worst things it could have been. We were told he was the 15th child to ever be diagnosed with it in the UK – that’s how rare it is.” 

Since the diagnosis, rarely a month goes by for Mickinley without a hospital visit. Something all the more challenging for the family as his brother John-Lee, who has autism, also needs a great deal of support.

“They both have very different needs,” said Mick.

“John-Lee likes a lot of walking and is quite hyperactive whereas Mickinley prefers socialising and relaxing.

“We really have to live our lives separately in the same house to meet their individual needs.”

Despite the many battles he faces, Mickinley is always the life and soul of the party.

“He wheels himself round in his wheelchair and he’ll go up to people, grab their hand and kiss them. He’s very affectionate and he’s always smiling,” said Tammy.

Since Mickinley was referred to Bluebell Wood for respite care, the family have found a warm and welcoming second home.

“It was a bit daunting for us at the beginning but our first visit was just brilliant,” said Mick.

“We went with both our children and they both absolutely loved it. The hospice really is for the whole family. It’s perfect for us because inside we can entertain Mickinley and outside we can entertain John-Lee.”

Bluebell Wood is also a place where Mickinley can just let his hair down.

“We went to the beach party in the summer and he had a brilliant time,” said Tammy.

“The Christmas party was also fantastic, he really loved it. We have photos of him laughing his head off. He even got to sit in the Ferrari that someone had kindly brought along for the children to look at.

“Where else could you do that?”

For mum and dad, it’s also about having somewhere they all feel comfortable and safe.

“It’s just lovely to come to Bluebell Wood and to have access to all the equipment and comforts that we have at home,” said Tammy.

“It’s like a second home for him – somewhere he can be safe. Even though we’re still quite new to Bluebell Wood, it feels as though they’ve known us forever.

“We do sometimes feel quite isolated so Bluebell Wood feels like an extended family to us now.”