Little Ted: A Mother’s Book Inspires and Educates Rare Families Worldwide
May 11, 2015
A smart, fun and very sweet book has launched in honor of author Nicola Miller’s son Eddison. Eddison lives with a rare disease called Xeroderma Pigmentosum, which requires him to wear special protective gear and take extra precautions when facing UV rays. The disease is complex, but the way in which Miller spreads awareness about the day-to-day challenges of the disease is easy enough for even a small child to understand.
Author Nicola Miller’s success with the series hopes it will prompt other rare disease organizations to work with her on more sets of stories and toys to help other children and families explain and understand difficult diseases. (Interested organizations are urged to reach out to her on her blog or Facebooks–links below.)
Global Genes caught up with Miller to discuss her son, her advocacy work and the little bear that has helped not just her family–but many others–come to terms with Xeroderma Pigmentosum.
Q: How did you come to write the Little Ted? What did you hope to achieve by telling this story?
A: When my son Eddison was diagnosed with Xeroderma Pigmentosum at 13 months, I immediately started looking for age appropriate reading materials to help us explain the various complex themes around living with the condition of Xeroderma Pigmentosum, and what it meant for him. Our search dredged up nothing appropriate and so I wrote the first Little Ted Story (Little Ted, Sun & Moon), which I started reading to Eddison. He loved the stories, and before long I started expanding and added more stories to cover other elements of his life and even one for his brother Raife to address being a sibling of a child with XP and how that feels (Baby Roo, You`re Special Too).
Q: And you wanted to expand their reach? What was the next step for you?
A: I showed these to Eddison`s Clinic which runs out of Guys and St Thomas and they suggested other topics, such as attending a clinic and going on holiday. I saw how well Eddison responded to the books and how useful we found them in increasing his understanding of his condition in a non-scary way, and so I felt they would be a useful tool for all parents with children affected by XP to have, and so we, Teddington Trust set about achieving that!
In addition to creating a beautifully illustrated suite of six stories aimed at children aged 0-12 years which children with XP and their siblings can enjoy, we see this as a very valuable resource for parents to help with their child’s education, allowing them to discuss themes that might otherwise be difficult to address with young children. These books are also a highly valuable resource for peer education, and allow teachers and agencies working with these children, the opportunity to discuss the themes around their care in a non-personal way, with Little Ted being the focus of discussion and storytelling with the children.
To complement the book series, and to increase accessibility and impact of the resource, and as another tool for both parents and educators we developed a Little Ted character bear. This bear is an interactive UV reactive bear complete with his own UV protective clothing. This allows children with XP to learn about the importance of clothing integrity and selection when `protecting` their Little Ted and gives them a physical character that they can use when discussing feelings and thoughts about given situations in a non-personal way.
Q: What sort of features does the Little Ted Character Bear have?
A: The bear has a signature on his paw which is embroidered in UV reactive thread. While protected the children can see that this remains white (which can be seen through the UV blocking film panel) However, if his protective trousers are removed, and he is exposed this reacts and turns a vibrant blue which increasing intensity the greater the UV level. This allows children to observe in a controlled and safe way using the bear, the tangible effect UV has on them and their bear.
Q: What is XP and how does it affect your son, Eddison? Q: What kind of protective tools does someone with XP need to have in order to live a more normal life?
A: This is difficult to answer as XP affects every single element of Eddison`s life! It`s a common misconception that having XP simply means keeping out of direct sunlight and staying in the shade. In actual fact UV is present in all daylight hours regardless of the temperature, cloud cover and weather, so even on the darkest, dullest and wettest days UV is there. Therefore in order for Eddison to stay safe outdoors he must be fully `protected` for every minute of outside time unless in the hours of darkness when UV is no longer present.
`Protection` for Eddison means that every, and we mean every, millimetre of skin needs to be blocked from the light. This means appropriate, heavy weave of special (and very expensive) UV fabric clothing which includes gloves, in addition to a full face visor, which is made from combining a UV proof hat with neck protecting tail and UV blocking clear plastic face shield. Due to Eddison`s age and as a secondary line of defence to his head and ears should his hat get knocked off when he is running around he also wears a neck buff around his neck and head.
Unbelievably, there is more… Under all of this protective clothing Eddison is required to wear SPF 50+ sunscreen which needs to be applied every two hours or more if he is sweating etc.
Q: Tell me a little bit about the project you have going on in South Africa…
A: South Africa was the first destination to receive our Little Ted Packs. This was important to us, as we have supported the group before with UV protective clothing for their children the previous year at their annual Camp Bushbaby (gathering for XP families to come together in S.A,) and so we wanted to bring something to them again this year. In a country where education, resources and access to medical intervention is so varied and in some places poor and non-existent, we saw this as a great opportunity to reach out to all their XP children in one event so they would all benefit from the Little Ted gift and the education it brings. We worked very closely with the XP Society in SA who gifted the packs to the children on our behalf and it was wonderful to see the photos of their reactions which was priceless.
We have received similar reactions from families around the world along with wonderful letters and photos.
Q: What advice do you have for other RARE parents?
A: One thing that I have really learnt over the last few years, is to pick your battles and to remember; frustrating though it is, when people “just don’t get it” that although you have now (through necessity) had to become an expert in your child`s own, very unique and complex rare disease, you have to remember that others around you haven`t.
Ultimately, people outside of your immediate world, see windows of your life, usually the happier and easier times (because we make it look easy), but they go home and return to life as `normal`. They don`t see when you have the dark times when you cry because you can`t make this better for your child, when you worry yourself into the night thinking about their future, health, life expectancy, bullying, financial implications of their care and the list goes on! They don`t see all the preplanning you do to make life seem so `normal`, or the thousands of letters and emails you have to write, just to secure that nursery, or school place, or to make sure they can be included in the coming birthday party or trip.
So I guess my advice when dealing with others is to lower your personal expectations, cut them some slack and remember whether complete stranger or close friend; they just don`t know what you know and they don`t know every fibre of your child like you do and perhaps…and it`s just possible, that you can`t expect them to,
Visit Little Teddington Trust here!
Learn more on Little Ted’s Facebook page here.
Want to read more about Little Teddington? Anyone can download or view these books for free via Little Ted’s Facebook page.
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