Tille and Melle
His only comfort is six shots of morphine a day and a toy giraffe named Melle, but Tille, a six-month-old Swedish boy, has captured the hearts of people around the world.
Tille is suffering from a very rare disease that always leads to death in babies and those of us who have been caught up in his story helplessly wait for him to die at any moment.
Doctors have said many times that the end is near, yet, against all odds, he continues to fight day after day, living on air and love. During the last two months, he has lost more than half of his weight and now he does not eat and barely has water.
The disease is called Epidermolysis bullosa (EB) and he has Epidermolysis Bullosa Herlitz lethal, the worst kind. Babies with Herlitz have approximately 6-8 months to live and no child in Sweden has lived to see their second birthday.
A couple of weeks after his birth last September big blisters appeared on his face that later became sore wounds. A couple of months later EB was diagnosed; almost two babies are diagnosed with EB every year in Sweden.
His mum, Therese Vesterlund, and dad, Nicklas Svensson, don’t want to let his pain go on any further and have chosen not to put him on a life support machine. They want him to die at home, in peace. They have told him that it is ok to let go, they are ready. For them it would be a relief to find him dead in the morning; it wouldn’t be nice for them, but for Tille.
The whole of Sweden is following Tille and the family are getting loads of mail, letters and presents from Finland, Norway, Germany, the USA and more. Thousands have read his mum’s online diary, which she started writing after the diagnosis in an attempt to work with her feelings. At the same time, she started a discussion forum about children with deadly diseases and the response became enormous.
There’s a Tille-foundation that collects money for research.
Visit Swedish newspaper Aftonbladet for more.
UPDATE: Tille passed away on Saturday 16th. Ovi sends our heartfelt condolences to all of Tille’s family in this time of sadness.
April 12th, 2006 at 1:32 pm
God, as a parent I don’t even know how to deal with reading it, not living it.
April 14th, 2006 at 5:39 am
I am glad to hear there is a foundation…
Incredibly it is always the parents that have to start a foundation to get money to research these disseases…
Hope some day people will give more money for such thigs, than for plastic surgery or pharmacy monopolys…
April 14th, 2006 at 3:20 pm
This has touched me enormously. I follow the diary every few hours, being afraid to read when the moment has come but at the same time knowing it´ll be a relief for him. Little sweet Tille is on my mind almost constantly and will be for a long long time after he moves on. Such a strong little boy.
If someone is interested in purchasing a butterfly pin (Butterfly because of ThE Butterfly children) then you can contact Tilles dad Nicklas http://www.familjeliv.se/krypin/tillespappanicklas/gastbok.php. The pin is 20SEK (about e2) and the money goes to EB foundation.
April 16th, 2006 at 8:06 am
Tille became an angelbaby yesterday at 19:45. He went away peacefully and it was over very quickly. The family has mixed feelings; they are sad but on the other hand relieved as well. Tille´s mum also writes in her diary that now Tille is running around with all the other angelbabies on his star. As I wipe my tears I can only say he will be missed by so many, even people who never met him in person, but only on the internet and newspapers. Like me.