At just 3 ½  years old our twin daughters, Francesca and Josephine, were diagnosed with a degenerative neurological condition – Sanfilippo disease/ MPS 111A. At birth most children do not show signs of the disease, but as it progresses the children degenerate; losing the ability to speak, walk and eat. Their diagnosis was completely unexpected and a massive shock to the whole family. As we adjusted to a ‘new normal’; grandparents, family and friends also needed to adapt and to cope with the fact that our girls were not expected to live beyond their teenage years. It was a bewildering time for us and everyone around us.

A couple of years later, in 1998. our family was referred by the Paediatric Consultant to a newly formed, local children’s hospice at home charity called Jessie May.

In the early years Francesca and Josephine were very active and cheeky. Jessie May nurses visited our home to play, sing, read stories and provide teatime help. As the girls’ health deteriorated, the highly skilled Jessie May nurses adapted to the increasing needs of our family.

The continuity of care, kindness and compassion offered by Jessie May meant that Francesca and Josephine always enjoyed their visits. Over time, Chris (the girls’ Father) and I came to trust the Jessie May nurses wholeheartedly. We knew that they would give the highest standard of care, enabling us both to leave the girls and be out of the house at the same time.

Jessie May was also a great source of information and advocacy which helped us to cope with the many stresses and challenges we faced. We especially looked forward to the Jessie May family events and Christmas parties. Francesca and Josephine had a lovely time and we were able to socialise with other families, have fun and form some lasting friendships.

As Francesca and Josephine progressed through their condition, they lost all of their physical skills and mental capacity, requiring 24/7 care. Jessie May nurses empowered us to meet the increasingly complex care needs our children required and supported us to maintain the best quality of life we could manage in such difficult circumstances. They were a source of strength as we approached the end-of-life phase, and helped us to plan and prepare for this, knowing they would be alongside us at every stage and through bereavement.

Francesca died aged 15 years and Josephine aged 18 years.

Francesca died at home after a sudden downturn in health over the course of a weekend. She was visited by her Consultant, but there was no time to organise nurse visits. Chris and I cared for Francesca and Josephine, keeping everything peaceful and calm. We were very aware that this would be our last weekend as a family of four.

Jessie May nurses came to give Francesca very tender care following her death, which really helped us to process what had happened. This was carried out with such dignity, love and sensitivity. They also supported us around the time of her funeral and afterwards with ongoing visits for Josephine who had lost her twin sister.

Francesca and Josephine were our only children. When Josephine died we were totally devastated and lost. Our busy home was suddenly very silent and empty. I had no sense of self or purpose and no idea how to move forward. I wanted to meet with other bereaved parents and turned to Jessie May for a solution. Volunteering alongside the bereavement team, I helped to set up a bereavement support group for parents; the Purple Group, which is now an established part of the service.

Grief following the death of a child is life- long. Chris and I don’t want to forget our children but we have had to learn to live without them and Jessie May have been a source of strength for us both through this time.

Chris and I view Jessie May as an extension of our family. We appreciate everything they did for us while Francesca and Josephine were alive, and following their deaths.

Over the years we have tried to ‘give something back’ by fundraising and promoting the charity, and I was also a trustee on their Board for 8 years. In March 2022, our nephew, Lloyd Kembrey, ran the Rome marathon in aid of Jessie May and in honour of his cousins, He raised an incredible £3,200 for Jessie May but also raised vital awareness and for that we are so proud of him!

To everyone who has supported Jessie May over the years, I just want to say thank you for recognising the importance of this work.

Jessie May nurses make a positive difference to the lives of the children and families they care for. They are highly trained and skilled, working 1:1 in a child’s home. This requires confidence and resilience but also the support of the wider team and organisation. The charity places the child and family at the centre of care and decision making, and family involvement is valued and encouraged.

Children’s Palliative Care is very expensive to provide, so generous and ongoing funding is vital. I urge you to continue to support Jessie May in any way you can, and to spread awareness and tell others about the charity’s great work.