Love Ella

Love Ella is a story written by Madeleine Witham, mother of Ella. Ella was born in 1995 with a very rare syndrome known as Cornelia de Lange Syndrome, and this book tells a powerful and thought-provoking story of the journey from Ella's birthday, and the eleven years that follow. Any parent or family member, teacher or therapist of a child with special needs will be able to identify with the strong emotions illustrated in this book. www.love-ella.com

Thursday, August 10, 2006

Sunrise

Hope you can tune in to see Ella live on Sunrise this morning. It is an early start to be on the show at 8.15, she will not be happy about being woken up!
Will keep you updated with the Alan Jones gig, possibly Friday now.

3 Comments:

  • At 9:47 am, Blogger Daniel said…

    Hi Ella,
    My name is Daniel. I saw you on TV this morning. I was born with a rare syndrome too. It is an interstitial deletion of chromosome 12. There have only been another 11 people diagnosed worldwide. Some of my problems include missing adult teeth, skin problems (it like an eczema all over my body). I also have hypogonadism, and will probably need to start hormone treatment very soon. It has caused delayed puberty and delayed growth, so I'm very tiny and I look more like an 8 year old rather than a teenager. I also have a severe learning delay and I work at a year 1 to 2 level. I have also been diagnosed with ADHD, but I think I'm starting to grow out of it now :) I have an over friendly nature, and I don't know how to tell lies or be deceptive. I do not know personal boundaries and will hug and kiss strangers or try to smell their hair. The Doctor now think that I also have Aspergers Syndrome. I know this makes me sound as though that I'm not very intellectual, but it is quite the opposite. I have an acute memory and I remember everything that I'm interested in, some people think I'm a savant, because of the way I can talk about subjects that I'm interested in, such as history and movie trivia. It is amazing how missing a small piece of genetic material could cause so many problems but I think we are lucky, because we can see the goodness and beauty in people and we don't hold grudges. Sometimes I get teased because I'm different, I feel sorry for them because I think they're jealous, because I'm special. You can visit my blog at http://www.danielsartworks.blogspot.com/ I hope to hear from you.

    Kind Regards,
    Daniel and Christine (Daniel's Loving Mum)

     
  • At 8:19 pm, Blogger Madeleine said…

    Hi Daniel,
    Thanks for your great email that you sent to Ella's "blog" today, you are the very first "blogger" because we only set it up last night. Gosh you sure do have a rare syndrome, and we thought Ella's was rare! Ella also has missing adult teeth and is also very tiny (more like an 8 year old than a 11 year old) so it sounds like you have some great things in common. Ella had a fun day being on TV but is very tired now and has gone to bed. Your mum sounds like a wonderful person too and I agree with you, it is great to be special isn't it?
    I have written a book about Ella that you might like to read sometime and it has some photos of her when she was a baby. The geneticists haven't been able to find the cause of CdLS but the have identified some genetic changes on about half the children tested. Ella does not show these changes and the researchers are working hard at finding out more. Ella's syndrome is not hereditary, just a random mutation. We are very glad that Ella was given to us and we love her very much. Please keep in touch Daniel and a big hug from Ella Bella and me,
    Lots of Love,
    Madeleine (and Ella)

     
  • At 8:03 am, Blogger Daniel said…

    Hi Ella,
    Having a rare syndrome is just like being an ordinary person living in an ordinary world, nothing has changed. I like your family and I have a sister too, she is nice too, her name is Amanda, she is 23. My brother's name is Jesse, he is 14 yrs old, he rides a skateboard.
    Love From,
    Daniel (Daniel told me what to write) Daniel can't write yet, but is very articulate.

    I also think Daniel and Ella have allot in common and it has made Daniel feel a little better to know he is not so alone. Daniel's Geneticist is presenting him in 3 different Genetic conventions all over the world, so it will be great to get some feedback. Daniel's syndrome is also a random mutation and the deletion is quite substantial. We are very lucky that he is doing as well as he is, but it sure has been an up hill battle. We go to Westmead again on the 24th of August. I think they are going to test his pain response as we never know when he is getting sick, as he has a very high pain threshold. They are also looking into a diagnosis of Asphergers (which hopefully will help with school) It was very hard to get special placement in a special school, because his syndrome has no name. He also presents to be intelligent. But when you look more deeply this is clearly not the case. I hope you don't mind if we keep in touch.
    Hugs,
    Christine

     

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