Every year on 6 October, we come together to celebrate World Cerebral Palsy (CP) Day, to recognise the 17 million people around the globe living with the condition. This years’ celebration saw people with CP, their families and some incredible charities share stories on social media, host events, and wear green to show their support.
CP is the most common physical childhood disability, yet despite this, there’s a broad lack of knowledge of what it is and what causes it, even in the medical field. It’s a complex condition, which can be caused by injuries during birth, and leaves those affected with varying conditions that affect their muscle control and movement. It’s also likely they may have learning difficulties, epilepsy and communication difficulties.
There are an estimated 30,000 children with CP in the UK and as of yet, there’s no known cure. World CP Day aims to raise awareness of the condition, working to ensure children and adults with CP have the same rights, access and opportunities as anyone else in our society. Early detection and intervention is key for improving the outcomes for those living with CP.
In this article we meet Josiah and Zach, two of our amazing clients who live with CP, and Elliot, a young boy with hypoxic ischemic encephalopathy (HIE) - which is a type of injury to the brain - whose parents are using Instagram to ensure his story reaches a wider audience.
All three families are focused on protecting what matters most – the best possible love and care for their child.
Meet Josiah
Following a number of tests Josiah was diagnosed with CP at 18 months. He has learning and speech difficulties, and relies on a wheelchair. We’re able to secure lifelong specialist support, care and therapies for Josiah so he’s able to have the best possible quality of life.
Our specialist Medical Negligence solicitor Lindsay Tomlinson explained: “Josiah’s parents have shown incredible resilience throughout the years I’ve worked with them, in coming to terms with what happened and providing the best life possible for Josiah, as well as his brother. Like in many cases where a person suffers a brain injury as a child, Josiah has had to wait several years for doctors to fully establish the true extent of his injuries and predict his future needs.
"While nothing can make up for his injuries it’s vital that lessons are learned so others don’t have to experience the upset that Marc, Lotti and the rest of the family have endured."
A beautiful tribute
Marc and Lotti, have recently written a book, which we’ve helped to produce, called My Name Is Josiah. It tells Josiah’s story from his point of view, including the challenges he faces and the things he enjoys doing. It also touches on why it’s so important for people to become more aware of CP.
The family hope the book will be used in mainstream schools to teach children about how young people with disabilities are just like them and enjoy doing the same things.
Lotti said: “Coming to terms with what the future holds for Josiah has been difficult but we feel so blessed that he is our son. While he faces many challenges we’re so proud of the determination he shows not to be defined by his condition.
"He’s an adorable little boy with an infectious smile who enjoys things all children do such as playing with friends and singing. Our lives are dedicated to helping Josiah. He’s making amazing progress at a conductive education school."
Read more about Josiah’s story
Meet Zach
Zach’s nine years-old and lives with his mum Claire. He was diagnosed with CP when he was three, after sustaining a brain injury at birth. Zach was born at full term following an uncomplicated pregnancy, but he was pale and floppy and needed resuscitation after birth. There were problems intubating Zach, and it took around 10 minutes before he was ventilated.
Zach’s condition means he has difficulties with his mobility and cognitive development, and requires specialist care and equipment for day-to-day life and also suffers with epilepsy.
Since his diagnosis of CP, we’ve helped Zach and his family access the specialist therapies and support they need to help them, whatever the future holds. This includes a speech and language therapist, an occupational therapist, and a physiotherapist to help with his mobility.
Walk on, walk on
Earlier this year, Zach started walking independently without the use of his frame, so in June he took on the 2.6 Challenge, a nationwide fundraising event held this year in place of the London Marathon, and successfully completed 130 laps of his garden. He finished the laps on his birthday, and raised more than £11,500 for the Epilepsy Society, citing Captain Tom Moore as his inspiration.
His solicitor Rachelle Mahapatra was so proud of his achievement, she said: "Zach’s cheery and positive attitude never ceases to amaze me. He inspired so many people with his fund-raising walk during lockdown and the amount of money he raised was incredible."
Sadly, throughout his challenge, internet trolls posted malicious tweets with flashing images on the Epilepsy Society’s social pages, with the intention of triggering seizures in those affected. The charity is now campaigning for this type of behaviour to be criminalised under Zach’s Law as part of the Government’s Online Harms Bill.
Claire said: "Zach was deeply upset by the trolling, but he was determined to rise above it and not let them win. We’re so pleased to be a part of Zach’s Law so we can help put an end to the abuse and stop anyone else from going through this."
The family have continued in their quest to raise awareness and joined us on World CP Day to share Zach’s story, which included being interviewed on BBC News. They hope that by sharing their experience it'll help others understand more about the condition and why a disability doesn't need to be a barrier to people from achieving their dreams.
Looking ahead
Zach recently returned to school, following the easing of the government COVID-19 restrictions and is enjoying his time so far in year five and is very eager to learn.
Claire explained: “He’s been using technology packages to assist with his school work, in particular maths, which he’s really good at but is hampered by his struggles with writing. The technology helps him keep up with his classmates.
"Zach’s gone above and beyond what anyone ever expected. He's such a bubbly and happy boy, and doesn’t let his speech problems stop him from communicating.”
Read more about Zach’s story
Meet Elliot
One year-old Elliot lives with his parents Alex and Nick and older brother. He was deprived of oxygen when there were complications with his birth and as a result sustained a brain injury. The medical term for his injury is HIE, which can result in CP, and although it can’t always be diagnosed at such a young age, Elliot may have developmental delay and issues with his movement.
Elliot’s mum Alex attended hospital with irregular contractions and due to slow progress in the second stage of labour, she was given oxytocin to speed things up before being sent to theatre to have a C-section.
Elliot was born in a poor condition, he was pale, floppy and had no spontaneous respirations and after being intubated, he was transferred to a resuscitation unit and received brain cooling treatment. Alex had suffered a uterine rupture which was 4cm in length vertically and her bladder was inadvertently cut and she required surgery to repair this.
Diary of a cooling kid
Since Elliot’s birth, the family have been keeping an online diary of his care and progress. They hope to inspire and support others who may be going through the same issues they’re facing as their child grows.
The Instagram account @diaryofacoolingkid documents how he’s learnt to roll over, the family’s playtime in the garden during lockdown and the specialist therapies Elliot receives to help his condition. Alex explained: “We started the diary to document what we were going through on a daily basis as a family, and as well as helping us to share our story, we hope that others may find a crumb of comfort in there too.”
We’re helping Elliot’s parents to investigate the care their son received and to explore the circumstances of his birth in more detail. Anita Jewitt one of our expert solicitors explains: "Sadly, because of his injury Elliot may now need specialist care and rehabilitation for the rest of his life. His family would like to do all they can to obtain the support Elliot may need to help him live his life as independently as possible as he grows up."
Mum Alex added: "During the early years of Elliot’s life we know it’s crucial that he receives specialist support, rehabilitation and therapies, as early intervention can be vital in helping the brain to develop as much as possible.
"While we are aware that he will always be affected by his injury we are focused on giving him the best quality of life we can, no matter what that takes. His first year has been so difficult to come to terms with and to understand what is best for Elliot, but we are determined to help him and we are so proud of what he is achieving so far."
Read more about Elliot’s story
Thanks to all the charities we work with and the clients we meet who inspire us every day with the positive stories they share and the amazing progress they make.
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