Continuing Bonds with Donna

“Donna can’t tell me exactly how she feels but when she smiled, I knew she was happy with her portrait.” Fiona, Donna’s mum

Portraits with Purpose: Continuing Bonds is a collaboration between St Oswald’s Hospice and Local Artist, Leanne Pearce. Working with 12 bereaved and pre-bereaved families who have accessed our bereavement support service and/or other care services, Leanne has created stunning paintings of their loved ones to support them in their ‘continuing bonds’ process. Here is the story of one of the families who took part in this unique and beautiful project.

Donna was diagnosed with a mitochondrial disease called Pyruvate Dehydrogenase Complex Deficiency (PDH) as a teenager. At the time, her mum, Fiona, was told her daughter would not likely reach adulthood.

Last July, Donna celebrated her 27th birthday.

The progressive brain condition, however, means Donna is profoundly disabled. She uses a wheelchair, is tube-fed and suffers multiple seizures a day. She is also ventilated 12 hours overnight and when she naps or is poorly during the day.

But despite her complex needs, Donna brightens up every room she enters, as her mum explained:

“Donna has a huge love of life. She’s cheeky and enjoys being around people. She’s also adored singing since she was a child.”

Between the ages of 13 and 25, Donna spent monthly short breaks at St Oswald’s Hospice Children and Young Adults Service, where she enjoyed meeting her friends and getting involved in all the activities from music therapy to accessible surfing.

But Fiona spends each day knowing her daughter has a progressive, life-limiting condition.

“I know Donna will die. It could be tomorrow, it could be a year, or it could be longer. It’s always there but I try to be as positive as I can and count my blessings each day I get to be with her.”

A deep faith has played a crucial role in helping Fiona deal with her daughter’s prognosis and she is now the Chaplain at St Oswald’s Hospice.

Fiona, who will complete her Ministerial qualifications this autumn, spends 2 days a week at the hospice talking to patients and families, of all faiths or no faith at all. She also leads our Easter and Christmas services in our Chapel.

“It’s the best job in the world,” she added.

Fiona and Donna have enjoyed being part of Portraits with Purpose: Continuing Bonds. Donna, in particular, loved painting the background of her canvas – and Leanne’s arm, too!

On seeing the finished portrait, Fiona immediately saw Donna’s “joy shining through”. She turned to her daughter to gauge her reaction.

“Donna can’t tell me exactly how she feels but when she smiled, I knew she was happy.”

Our care: Children and Young Adults Service