'I found my happy, healthy baby dead in his crib - then was plagued with guilt when I realised I couldn’t afford a funeral’
“Luke hated hospital. We did as much as we could to make it better, taking his own duvet and his console but in terms of the treatment he just got on with it.
“We found a clinical trial in Barcelona but the start date wasn’t until the second week in January this year. “Personal finances had been a concern as we'd were getting disability allowance and child benefit which stopped straight away. “Alysha has been a tower of strength. She’s had her moments but we all try and get through it together.“We’re in a better place than we were a few weeks ago but the process is going to take time."For the last thirty years Co-op Funeralcare has waived their fees and they have helped 25,000 families so far.
“However, for some time there has been a lack of consistency across the UK which has left many bereaved families facing financial hardship. “Seeing our tiny baby go through that was horrendous. Her body swelled up, she had sickness and diarrhoea.“Isabel was the happiest baby in the world, smiling all the time. You would never know she was poorly.“As well as the emotional toll, caring for a sick child for a year is a huge financial strain.
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