It has been three years since Jago’s accident and I almost cannot believe that my baby is now four. Although we walk a rocky road Jago has been calmer and life has been slightly better for him and all of us. He now can access a special nursery every day and participate in his own way, in life.
The last year has had many challenges but the biggest one has been around the subject of “acceptance”. I always thought that when people spoke of this subject it would be something that I decided to do. But instead it’s something that just happens, in my case in a very emotional and terrifying way.
You see I’ve been living on the edge for all this time, fighting my way through all the challenges and being driven by grief and anger, the fight is what kept me strong. At the beginning of the year something changed and I found I was exhausted, so extraordinarily tired and sad that I just couldn’t do very much… but feel sad. The tears just flowed and didn’t know how to stop them.
I know now that this was my first step into accepting that my beautiful, perfect boy would not come back and that this lovely boy that I hold so tightly every day will be here to stay. The fight was over. It was time to move on and just manage each day as it came, to start looking in at my family and not out to find a solution…clinging to anything that might help. The inner me just said “STOP”.
So I did…
Although hard to accept, this change brought with it a relief and a new strength to start living as me again, having a life…and not just pretending to have one. Before my fears were locked inside but now I can verbalise them…not easily…but I can. My inner soul is no longer locked away and I feel strong enough to face the world and try to make changes for others.
So I began to focus on creating a new resource website for parents like me. An inspiring web-based lifestyle resource, designed to support and which will bring people and their ideas together. The idea is to offer a well-run, contemporary virtual place for those enduring the stress of dealing with the tragedy of a severe brain injury in the family. We believe this will encourage people that would normally shy from such resources to join forces and help others create a stronger voice and share vital information, perhaps sometimes otherwise well out of the reach of the average family.
There are no UK based websites currently out there that effectively bring together all the important issues that surround these types of injuries and present them in a positive, contemporary and powerful context whilst also offering expert and evidence-based support with real-world guidance on how to survive this world that any family can suddenly find themselves in.
The website will be the first of its kind to offer support & information on the broadest range of subjects such as medical issues, nutrition, therapies, disability & family rights, holiday advice, suggestions & offers, clothing, important funding advice, equipment etc. We aim to select the ‘best of the best’ and condense them, then present them in an inspiring and uplifting lifestyle website.
With a magazine feel and blog format it will bring constantly updated weekly Top Tips, inspiring stories, relevant current affairs and breaking science stories and allow parents to discuss these within a fully moderated forum.
It will also act as a pathway to all of those wonderful charities and support groups already well established but perhaps remain unknown to many parents, particularly those recently facing these new and alien challenges.
Thank you for your on-going support and look out for the launch of Brainstars!
Thank you for visiting the Jago Worrall Foundation
On 11 March, 2012 our lives changed forever. Our beautiful 17 month-old son Jago slipped away from the other children, all staying with us that weekend. He was missing for the briefest of time, but unfortunately decided to explore the duck pond at the bottom of the garden and fell in. He was found in quick time, but it seemed all too late.
A call to the emergency services brought first the police, then after twenty minutes, an ambulance.The paramedics fought for forty minutes with his lifeless body in our front hall, which was now full of uniformed and un-uniformed people, all fearing the worst, until one of the paramedics shouted “everybody be quiet! I have something…”. The next few moments were palpable, a collective holding of breath until the words “I HAVE A PULSE” rang out in the hallway.
I ran to my wife in the next room, already grieving our loss, such was the seemingly hopeless situation and I remember saying “it’s not over!”. Far from it, this was to be the beginning of a journey where the destination may never be decided.On that first night we were delivered the devastating news that he would probably not survive the night. We were told that if he did survive it could be with severe brain injury due to the lack of oxygen to his brain.
The following day he was still with us and we asked his consultant what his chances were of survival, he said that Jago had a 1% chance of survival.
In that first week, in our search for answers, we were given some targets for Jago to achieve i.e. breathing without aid, processing feeds, maintaining good o2 saturation and pulse which were given to us in terms of weeks. He achieved all of these in the first week.
3 months later, Jago is still fighting, he has been transferred to Tadworth Court in Surrey, UK’s leading paediatric brain rehabilitation centre. He can breathe on his own and he can swallow small bits of purée food. His eyes are open and he is tracking certain lights, he can hear our voices and moves his head towards sounds. In the Consultants own words ‘he has made remarkable improvements’.
Only time will tell what affect the oxygen starvation has had on his brain and how this will affect the rest of his life, but the fact that we still speak about Jago in the present tense is incredible, miraculous and testament to both the care that he has received and his own strength of spirit.
It has become clear that Jago will need ongoing therapies (Physiotherapy, Occupational Therapy, Speech and Language and Hydrotherapy) when he leaves Tadworth, all of which are extremely underfunded in the Community – and this is something we will need to subsidise with the support of friends and family contributions.
Various fundraising activities are being planned and information about these will be posted here and on Facebook and Twitter – If you would like to do something please post your idea or donate using the Donate button.
It is very early days for us and and we are focusing all of our energies into Jago’s rehabilitation as well as trying to sustain a stable family life for our other two boys. Eventually we would like to develop the Foundation into a resource that can provide parents with more support and access to relevant information. Being able to talk to somebody in a similar situation is vital to both comfort and manage expectations and in the absence of such a service we had to reach out to our American cousins to get any information at all.
Lyn and Barney Worrall