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Fundraising for Children's Liver Disease Foundation
Story
Message from Jade's Mum
I would like to thank you all personally for your donations but also simply for taking a look and becoming aware of an illness you probably had never heard of. I am so grateful to you all, and to Dtz for helping what has become the most worthy cause in my heart. CLDF are my heroes along with the whole Liver Team at King’s College Hospital.
CLDF has staff always on hand to help Jade should she need advice, support or friends going through similar situations. They have a phone line, a facebook page, an email address, and also visit the hospitals, thus offering several ways in which patients can meet them. They organise outings, workshops, camps. They also have a website which tackles every possible worry or problem a "liver child" could meet. So Jade never needs to deal with anything alone.
When this all started, I felt crushed. I felt depressed adjusting to this life change we had not chosen, constantly worried as our child’s own body was attacking itself. Wanting to protect her but unable to. How could I fight that. I felt helpless. But CLDF have been an immense source of support. Offering a friendly ear on the phone, emails and facebook messages. This service is opened to the whole family which is useful as this has affected/affects us all in different ways.
They provide all needed info on their website but also on a multitude of leaflets touching every aspects for children suffering from liver disease.
They organise a two yearly conference where we can find out the progress in medical research, meet the professionals in a less formal way and get together with other families in similar situations which is all invaluable to us.
In brief : They are there for us.
But the one thing they do which is of most interest to us, is : they fund medical research for liver diseases. We strongly rely on them to help in finding a cure to this horrible illness.
So thank you for helping us to support them.
Claude (Jade's Mum)
My daughter was diagnosed in March 2014 with Autoimmune liver disease type 2 which basically means that her own antibodies fail to recognize her liver as being a part of her body and have been trying to destroy it for years unnoticed leaving it extremely scarred. Luckily, a blood test taken in January for another reason raised the alarm in time. Her condition is a life threatening illness that will necessite her to take pills daily, along with regular blood tests and various checks (scans, gastroscopies, biopsies etc) for the rest of her life just to control it as there is no cure to this day.
The cause of this illness as yet remains unknown. You will not develop it by exposure to someone else with the disease. It is not thought to be due to a virus and has nothing to do with alcohol. Although there is a genetic link to it, at the present time there is nothing that can be done to prevent the condition occurring.
We are very proud of Jade who just soldiers on and never complains despite these big changes.
CLDF has been there for us from the start: They produce informative leaflets about every aspects of childhood liver diseases; they organize exciting events for the patients, their siblings, or even the whole family; two yearly conferences where we get the opportunity to speak to experts, and families in the same situation and also hear about all the research happening; a clear and concise website where all the info is gathered and accessible to all etc...
On top of all those things, they also offer a friendly ear full of advice whenever we call or email. This has helped us a lot as this year has been so tough on ourselves emotionally.
All your kind donations will go towards enabling these people to carry on their great work. We appreciate all their support since March but most importantly, we want to help them fund research as we hope that one day, a cure will be found.
Thank you.