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Ivy-Rose and teddy
Ivy-Rose is 4 years old
Ivy-Rose was diagnosed with a rare genetic condition called Phelan-Mcdermid syndrome when she was six months old

Ivy-Rose is registered blind, tube fed, has epilepsy and has been supported by Little Harbour for respite stays since she was 18 months old. 

“It was such a bitter sweet feeling to begin with when we were told that Ivy-Rose was eligible [to use Little Harbour], and we were quite clueless as to what Little Harbour was all about back then. When we were booked in for our first stay, I remember feeling worried it would feel like staying in a hospital, but that couldn’t have been further from the truth” said Ivy-Rose’s dad Andrew.

Andrew explains how the hospice has helped their whole family;

Ivy-Rose's family in the jacuzzi
“Little Harbour is like our extended family, they have supported us a tremendous amount before and during covid. They have offered us stays in-house after lengthy hospital stays, offered care at home, resilience stays, we have even visited the hospice just for a couple of hours to use the jacuzzi and have lunch. 

During covid they helped with shopping when we were shielding and the staff even went as far as delivering Easter eggs and baked treats to us at home to keep our spirits high during such a difficult time.”

As a family we love having access to the Jacuzzi and music therapy, Ivy-Rose loves the sensory room, and enjoys her cuddles and stories with the staff.

Little Harbour not only supports Ivy-Rose but also her big brother Harvi, mum Inez and dad Andrew. 

Harvi and dad on swing

“Harvi loves visiting Little Harbour too, he really enjoys the soft play and the sibling team put in so much effort to make his time at Little Harbour memorable and fun.

During a period of time where Harvi was feeling extremely anxious about his sisters health, staff from Little Harbour’s sibling team visited us at home and gave us resources and activities to help support Harvi through it.” Andrew explains.

“We are so grateful for all of the support and love that we receive from Little Harbour. 

We feel as though it’s the only place that we really feel at ease leaving Ivy-Rose due to all staff having necessary training and experience in all areas needed to provide the best care.