Phoebe first lost her freedom to play like other children when she spent months in hospital being treated for a rare life limiting genetic disorder aged 5 years old.
Phoebe had been struggling with a chest infection and, over a number of weeks, she became visibly weaker. She was subsequently diagnosed with a rare DNA disorder that meant Phoebe’s bone marrow was likely to fail and she is at a hugely increased risk of many cancers. It was a huge shock to her mum and dad, Lauren and Tom.
After her diagnosis, life changed drastically. Phoebe went from settling into her first year of school and her normal happy play at home to long stays in hospital. She underwent chemotherapy treatment, a bone marrow transplant from her dad and battled the effects of a dangerous brain infection.
Whilst she was in hospital, Phoebe’s family were operating in a restricted bubble to keep her safe from infection and only her parents were allowed to visit. Play was a vital part of Phoebe’s routine, providing structure and normalcy amongst all of the changes.
Play specialists arriving with the type of toys that Phoebe loved – especially arts and crafts, often supplied by Starlight – and spending hours playing and making things with Phoebe made a huge difference. They also ensured that Lauren and dad Tom could have a break away from the bedside, knowing that Phoebe was enjoying herself and being stimulated.
Just as Phoebe and her family were starting to get a bit of normality back into their lives, the Covid-19 pandemic arrived in the UK. Phoebe had only returned to school for a term when, in March 2020, everything changed once again and the entire family had to shield. For a second time, Phoebe’s life was shrunk to a few rooms, something she was already familiar with from all the time spent in hospital.
Lauren and Tom don’t know what the future holds for Phoebe and so seeing her once again robbed of precious playtime once again due to the coronavirus was incredibly difficult.
Their routine was restricted to the house, small yard and a daily walk whilst also working fulltime at home. The constant juggle was exhausting, so the distractions that arrived from Starlight were welcome breaks.
“Lockdown one had no structure. I was feeling bad that I wasn’t doing more with the kids, so when they had things that Starlight helped with that were fun we felt a bit less guilt. The fact that Starlight kept ringing to see how we were coping meant such a lot. The craft boxes they sent and the online entertainment meant so much to the whole family.”
The online zoom entertainment provided by Starlight helped Lauren and Tom to feel a little less guilt as their girls were able to have fun and be diverted from watching things on their tablets. The Christmas box full of crafting activities was also a big hit and they were able to sit and make things together like decorations and a sparkly light box, often competing to see whose was best!
Lauren says the fact that Starlight kept including the family in as many opportunities as possible meant so much to them: knowing that the charity was thinking of them was a boost just when they really needed it.
As the third lockdown eases they are taking the opportunity to gain more play space outside for the girls by moving house and are hoping that they will be able to prioritise many family days out and times focused on play and laughter.
This summer, we’ll be helping children like Phoebe in hospital and at home. We’re going to make this the summer to beat all summers – one where every seriously ill child has the freedom to play. And your support can make a difference:
“The money you donate makes a real difference to family’s lives. The support gave us an opportunity to have normality when we were in hospital. It gave us a break from the monotony and dire situation that we were in.”