A GRIEVING couple who lost their five-year-old daughter after caring for her around-the-clock are calling for changes to bereavement payments, after realising they faced losing their home before they could come to terms with their loss.
Joni Luntley and James Platt were devastated when their daughter Jessica-Lily lost her long battle with epilepsy, chronic lung disease and severe global developmental delay on July 8.
A fundraising appeal was launched by a relative when they realised their full-time carers’ benefits stopped on the day Jessica-Lily died, and there would be no bereavement payment.
The parents have called for the introduction of child bereavement payments to help people in their situation – attracting the support of Rugby’s MP who will raise the issue with ministers.
Mum Joni said it was “unthinkable” that she and partner James faced having to find jobs just four weeks after their bereavement, or risk losing the home where Jessica-Lily lived.
She said: “We would feel like we were leaving her behind. All our memories in this house would be shattered and there would be nothing we could do about it.”
The couple acted as full-time critical carers for Jessica-Lily, who was never able to walk or speak, was tube fed and could barely move. But their £600-a-month carer’s benefit payment stopped the day she died.
Joni said: “How are we expected to grieve? James and I spent almost six years as her full-time carers, and we have our little boy Jimi who is three.
“If you lose your spouse you are entitled to a payment, but if you lose a child you get nothing.
“Our lives haven’t been normal for a very long time. We can’t get back into normal life so easily – we haven’t even accepted she is gone.
“To lose a child is one of the worst things to happen to anyone. I don’t understand why there is no help for parents going through this.”
Joni and James no longer face eviction thanks to a fundraising campaign started by Joni’s sister Kirsty Luntley, which has already raised over £4,300 in just six days.
Joni said: “We were touched Kirsty would think of doing this. People have shown support that we will never forget, and have made it possible for us to grieve and not worry about keeping our home.”
Paying tribute to her daughter, she added: “She was the most inspirational person we will ever meet. She was and always will be an angel.
“We tried everything to save her, but it was her time and 15 minutes before she passed I told her it was alright, mummy’s here and if you’re just too tired we understand.”
Another bereaved Rugby family launched a charitable trust to support bereaved parents last week.
13-month-old Freddie Fox suffered fatal injuries in a motorway crash in December last year.
His family, originally from Rugby, launched Freddie’s Wish when they found there was little support for bereaved parents.
Freddie’s grandfather Steve Jolliffe said: “When you become pregnant you go into a system, but when you lose a child there is no such system and you are left to instigate everything yourself.”
Rugby MP Mark Pawsey said he would raise the issue in the corridors of power.
He said: “I have great sympathy for Jessica-Lily’s parents, who will be going through an incredibly difficult time.
“I will be raising the issue of bereavement payments for parents with government ministers and exploring what support is available for parents who so tragically lose a child.”
Visit www.gofundme.com/3b2akkmew to donate to Joni and James’ fund.
Read more about Freddie’s Wish here.