Fiona and Keara’s story

Fiona is a unique disability foster carer who opens her home to children with complex medical needs, some of whom have life limiting conditions. Fiona was once a Sick Children’s Nurse who dedicated her career to working with such children in the UK NHS and in African and Romanian orphanages.

In 2006 Fiona chose to become a Foster Carer, as she wished to give these children every opportunity to live outside of hospitals and orphanages and experience life in a family, within a community. Before caring for Keara*, Fiona cared for two other children with life limiting illnesses who sadly had shorter lives than Keara.

Fiona was introduced to Keara in October 2010 when she was five months old and still in hospital. Keara had been born with Je jeune’s Syndrome, a rare genetic disorder. She would require pioneering surgery in Great Ormond Street to improve her quality of life and extend her life expectancy. Sadly it is known that 70% of children with this diagnosis will die from respiratory failure in early infancy and childhood, with few reaching adolescence. Fiona wanted to give Keara the chance to live outside of a hospital for as long as possible. So from November 2010 to January 2011, Fiona cared for Keara in her home and their attachment began.

In January 2011 Fiona  accompanied Keara to London for her surgery, and remained with her for the two weeks she spent there. Sadly, in Keara’s case the surgery ended with complications and since then she has been dependent on a ventilator 24 hours per day.  Keara had to remain in Intensive Care from January 2011 until October 2012. During this time, Fiona spent 8-10 hours per day every day to ensure that a healthy attachment was maintained. In order for Keara to be discharged home, Fiona had to agree to the support of 24 hour on-site support from a team of nursing staff recruited specifically for Keara.  Fiona is naturally a very private woman but her dedication to Keara meant she had no difficulty really in agreeing to this.

Keara does have some contact with her birth mother who is in total agreement with Fiona caring for her daughter. Her relationship with Social Work is better with Fiona’s support. Fiona’s relationship with Keara’s birth mother has been supportive throughout, and this young mum not only engages very well with Fiona, but now also has care of a further two children.

Keara was discharged to Fiona’s home in October 2012 and has now been with Fiona for over three years. She has not been re-admitted to hospital. The fact that she is reaching many of her developmental milestones is a testament to the care she is receiving from Fiona. Keara is an active child who loves going on her holidays with Fiona (and her nurses), and continues to enjoy the many social activities Fiona has introduced her to.  Keara completed nursery school and has now started primary school in her local community.  Fiona has coped remarkably well with the intrusion of nurses into her home, but the time she can spend alone with Keara on a daily is being increased gradually. Both are treasuring this.

Keara continues to have high physical care needs as she remains dependent on a ventilator for her breathing. A trip to the shops for  Fiona and Keara involve an array of equipment and the support of another highly trained person, but to see them being able to do this simple task is really a joy. Keara is enjoying the simple things in life like going to the swing park and watching her Peppa Pig video and loving being back in Fiona’s home. Many thought this moment would never come but with Fiona’s dedication and care, Keara is now a little girl who is loving school, being at home with  Fiona and engaging with her wider community. She now enjoys a quality of life nobody thought possible. Fiona has dedicated her life to Keara and it is pure joy and honour to observe the relationship they have formed throughout this journey together.

*Real names have been changed to protect confidentiality.

Find out more about fostering a child with disabilities