Earlier this year we sent a large shipment of our Little Ted patient packs to Australia. Very sadly in the time between us initially making contact with the group out there and us having raised enough funds for the packs, two of their eligible children passed away. And so with great sadness we took the decision to remove the usual Little Ted signature from the paw of two of our bears and replace with the names of the individual children who had passed, so that these could be sent as memorial bears to their parents.
And this is not entirely isolated, a beautiful little boy in South Africa passed away within months of receiving his own Little Ted.
Death is never easy to talk about, especially in children, and in the case of XP the causes can be many. It can be a result of neurological complications, organ cancers and of course as a result of skin damage and cancers. It’s an often harsh and cruel condition and as a result some deaths are tragic and unavoidable, but some we can ALL do something about!
Early diagnosis, education and resources to enable robust protection can do so very much to improve the prognosis and mitigate against skin damage and its effects. And at Teddington Trust we are really, really trying to do something about this, both in the UK and globally, and here is how:
- Early Diagnosis: We are working very hard to get our Little Ted goes to school… pack into as many schools across the UK as is humanly possible! The pack is a valuable resource for all children, but maybe, just maybe this increased awareness and education across the country might lead to a few new diagnosed children;
- Education: We recognise that education for children with the condition is vital so they grow to understand their condition and how to protect themselves whilst still enjoying as full a life as possible. Our BMA Award winning pack does just that, and every child across the world with XP aged 0-12 years is eligible to receive one for free;
- Resources/Protection: We send free UV protective hats, gloves and visor film to children across the UK and internationally as needed to help ensure that regardless of economic status and resources available locally, all XP children have across to these two key elements of protection.
And so, this is why our #BearsforRare campaign is so important. For every £150.00 pledge/funded schools pack, we can address Early Diagnosis and Education, and with fundraising and grants we work hard to obtain, we can also provide the Protective resources.
Please help us, so that we can reach the growing number of XP children (in excess of 100) all waiting to receive our packs, so that we can get to them in time. And help us achieve all of the above!!
And if you don’t know how you personally can help please see below for a quick summary:
- A Parent? : Get your school to sign up and join our campaign: Click HERE
- A Teacher, TA, PFA? : Sign up or BUY your pack now to join our camping and access our resources: Click HERE
- A Company or Society: Why not sponsor a pack for your local school? Pledge HERE
- A Individual: You can pledge HERE: or if you would like to fund-raise for us please get in touch via firstname.lastname@example.org
- Everyone: Join our #BearsforRare social media campaign. Watch this short video to find out how. https://www.youtube.com/watch?v=tBk1025tIX8. We REALLY want this to go VIRAL so please we call on everyone who reads this post to get involved in this very simple way. See below a handful of some who have already joined the campaign.
Join the #BearsforRare movement and become the movement!!