HEALTHY LIVING: ‘It always felt like a caring partnership’

Molly Friend, from High Green, Sheffield, who died after being diagnosed with Krabbe's Leukodystrophy.
Molly Friend, from High Green, Sheffield, who died after being diagnosed with Krabbe's Leukodystrophy.
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“Molly was diagnosed in May 2010 at four months old with Krabbe leukodystrophy, which is a rare genetic disease.

“This meant she had a life expectancy of only 12 to 13 months, had to be tube fed, was on 13 different medications and needed 24-hour medical care.

Molly Friend, from High Green, Sheffield, who died after being diagnosed with Krabbe's Leukodystrophy.

Molly Friend, from High Green, Sheffield, who died after being diagnosed with Krabbe's Leukodystrophy.

“In September 2010 we found we were struggling to cope with Molly’s care as her needs became more complex and we were referred to Bluebell Wood for respite.

“At first, we struggled with this as I thought it was a place where people just went to die. “We visited the hospice for a look round, and the hardest thing was walking through the door and confronting my fears.

“I was so surprised how lovely the hospice was - it wasn’t at all how I’d expected.

“As a family, we started using respite every Wednesday night. This enabled us to get a good night’s sleep each week knowing Molly was taken care of. We had some really good times at the hospice. Molly loved the guinea pigs, the jacuzzi, the soft ball play area and the sensory room.Bluebell Wood allowed us to do things that we had tried to do with Molly but couldn’t because of our limitations.

“For us, Bluebell Wood will always have some lovely memories of the respite time we spent together. For the last month of Molly’s life we stayed at Bluebell Wood.

“This last month was a rollercoaster of emotions, and I don’t know how we would have coped without the hospice. Bluebell Wood also facilitated us having some time at home with Molly, just to regain a little bit of normality. The hospice made sure there was a staff member with us most of the time to help with her care, but it was fantastic to spend a full week before she died at home.

“After Molly died, she was in the Forget Me Not suite until her funeral. This enables you to slowly let go.

“I really don’t know how we would have coped without Bluebell Wood. You have to deal with really difficult things when you are at your most raw. At times when we were in the hospice we were confronted by not just Molly’s illness but other children’s conditions.

“You’re dealing with your emotions and others. This gets claustrophobic at times so a place to just escape, to just take some time out and take a breather would be fantastic.

“Some days you want to talk, other days you want to be alone, and a relaxed informal space is just what you need. We will never forget what Bluebell Wood did for us as a family.”