Martin House Children’s Hospice is highlighting the challenges parents with seriously ill children face as a new documentary series about ex-Little Mix star Jesy Nelson airs this week.
The charity wants to shine a light on the way many parents with seriously ill children report taking on a nursing role 24/7 for their children, after the singer revealed the devastating news that her twin daughters have spinal muscular atrophy type I (SMA) a rare, life-shortening condition which causes progressive muscle wastage.
Vicki Greensmith, director of clinical services at Martin House, said:
One of the many heartbreaking aspects of Jesy’s experience were her words, ‘I want to be a mum, I don’t want to be a nurse’.
She’s voiced the harsh reality that all parents of children with complex and profound disabilities sadly face – that they become 24/7 nurses to their children, often with little chance of a break.
Jesy shared her daughters’ Ocean Jade and Story Monroe diagnosis in January. Her new documentary ‘Life After Little Mix’ airs on Amazon Prime on Friday 13 February.
Vicki added:
At Martin House, we support hundreds of families who find themselves in the same position as Jesy Nelson. They have to learn to use complicated medical equipment, like ventilators and suction tubes; they have complex medicine regimes, with multiple medications to give to their child throughout the day and night; their children are often fed through gastrostomy tubes, so they have to manage that as well.
They also suffer disrupted nights, as their child may need machines to assist their breathing, they make wake in discomfort or need to be regularly repositioned. And on top of this, they have all the admin of managing multiple hospital appointments – and they may well have other children to care for too
It’s a relentless regime with no let up, and it’s so important to us to not only highlight the challenges parents like this face, but to make sure they have access to support at places like Martin House, where they can get a break.
Martin House, which cares for more than 500 children and young people with life-shortening conditions from across West, North and East Yorkshire, provides a range of support, including planned short breaks.
Vicki said:
It gives parents time to rest and spend quality time as a family instead of focusing on medical tasks. Parents often tell us they can be ‘mum and dad’ instead of a nurse when their child is at Martin House.
In addition to short, planned breaks at the hospice, Martin House can support families with home visits and support when their child is in hospital, as well as providing around-the-clock phone and medical support.
Vicki added:
Parents often tell us how reassuring it is to be able to call us whenever they need it, whether they need to consult one of our doctors at 3am because they’re concerned about their child, or just to talk to one of our care team for some support – it makes them feel less alone.
Sophie Bateson, whose daughter Alayna, seven, has been supported by Martin House since she was a baby, said she and her husband Jezz value the family time it gives them with her and their two sons.
Sophie said:
On a day-to-day basis, we run like robots, we have to, we have to be in a routine, we have to make sure everything is set for Alayna. Just to have that relief during a stay at Martin House for those couple of days, it gives us a refresh, a boost.
The best times we have been able to spend with Alayna have been at Martin House – it takes the medical side away from us. We will cherish those memories forever.
