4 stories of 2020 from disabled people and their families

Last year raised unprecedented challenges, particularly for people with disabilities and their families. As we celebrate National Storytelling Week, we look back on a few of the stories we shared throughout the year.

Jai rang the hospital bell, marking the end of his treatment

Jai was diagnosed with Alstrom Syndrome which is one of the rarest genetic diseases in the world. Not only does it affect your vision and hearing but also makes you susceptible to other conditions such as diabetes. Since the diagnosis, Sense was there to support Jai and Pam through all that was to come.

A year later, while still getting to grips with the difficulties of living with Alstrom syndrome, Jai was also diagnosed with Leukaemia.

This devastating combination meant that Jai was the only child in the UK with both conditions simultaneously. Fortunately, Jai had his mum and brother at his side. Together, they fought the effects of nauseating treatments, spent nights walking through empty hospital corridors and travelled countless miles chasing every and any hope for success.

As 2019 drew to a close, after three years of treatment, Pam and Jai received the news that they had been waiting for. Jai’s treatment was over and his Leukaemia was in remission. There was just one last hospital procedure before being cleared, Jai had to ring the bell in the children’s ward.

Read Jai’s full story here and watch him celebrate the end of his treatment in the video below.

17-year old Emma shielded to protect her bother

Young Emma always helped her mum to care for her brother John, who is 8 and has cerebral palsy and epilepsy.

When the pandemic started, she shielded to protect her little brother, and even gave up her job at a local bakery.

Mum Lena has nothing but amazing words for her daughter:

“After another difficult night I sit here with a clean well looked after house. No one would ever guess that her brother is a 24hr job. If it wasn’t for my daughter Emma, my house would be crumbling around me. She is like a domestic goddess cleaning, cooking, ironing doing absolutely everything round he house to leave me free to look after her brother.

Read Emma’s story here.

Lena, Emma and John pose for a family photo, sitting on the grass in the sunshine.

Staying connected through lockdown

Lockdown showed us how lonely life can be when the people and places we love are taken away. But, what if life was already lonely before the isolation of the pandemic?  Sadly, that’s the case for thousands of disabled people in the UK. A study by Sense, before the pandemic, revealed that one in two disabled people feel lonely every day. And lockdown only made things worse.

With the help of a grant from the Government’s Loneliness Fund, we set up Sense Connect to offer online sessions and activities geared towards people with complex disabilities and communication needs. 

Chloe communicates using basic Makaton, noises, gestures, and in particular facial expressions – she loves making faces and seeing other people’s facial expressions.

Over lockdown, Chloe was no longer able to attend college or access her usual short breaks, leaving her particularly isolated from the people who know her well and have the specialist skills to be able to connect with her. We matched Chloe up with her virtual buddy Alanna, and over the past few months, they have developed a real connection. Chloe’s mum has told us how much Chloe loves spending time with Alanna and looks forward to their weekly sessions.

Read Chloe’s story here.

Chloe and her mum on a video call with Alanna, communicating through gestures and expressions

Unstoppable Claire

A keen runner, Claire was all set up to run the London Marathon in 2020. Her son Hugo has complex needs, including CHARGE syndrome, so she decided to take the famous race to raise funds for Sense.

When the event was cancelled due to the pandemic, it didn’t stop Claire for completing her challenge, running the full 26.2 miles in her hometown – and on her birthday, nonetheless!

This new arrangement had the added benefit that her son Hugo, who doesn’t like big crowds, was now able to cheer her on.

Read Claire’s story here.

Claire posing in front of a field with her five children

Useful links

  • Find out more about Sense Connect, our services tackling loneliness and isolation – now also available online.
  • Learn how Sense can help support your child
  • Get in touch with our free Information and Advice service to receive impartial information about living with complex disabilities, including deafblindness.