Welcome to our new blog! We have decided to move our 'news-room' to this blog. We have put the old journal, photos and video-clips from the past in the archive.
For those os you who do not know us, we are a small family of four: Tue, Kirstine, Sebastian and Marie-Louise.
Marie-Louise has - so far - had a rather uncomplicated life: she was born on the 12th of December 2007, and is eating, sleeping and growing the best she can. She is the sweetest little baby girl and we are so thankfull to have her with us!
Sebastian was born on the 5th of July 2004. At birth Sebastian was missing one thumb while the thumb on the right hand is not working properly. What was much worse was that he was unable to eat due to duodonal atresia, for which he had surgery on day 2 of his life. While recovering from the surgery, Sebastians bloodcounts went down and 3 weeks old he was given a red-cell transfusion, which seemed to stabilise him, and his counts have been fine ever since. The transfusion gave the suspicion of Fanconi Anemia, and a bloodsample comfirmed his diagnosis. Apart from the thumb and stomach issues, Sebastian has hearing loss and wears a Baha-softband hearing aid and he is producing no growth hormones. We have started treatment with growth hormones in the Summer of 2006 and they have helped him a lot. A mutation analysis has categorised Sebastian as FA-D2, and we are continously trying to get a grib of the significance of this.
Despite all these challenges, Sebastian seems very keen on fighting every one of them! Sebastian is in a special kindergarten which is located nearby where we live. In all of Denmark this is the only kindergarten for children with immune-system issues. We are so thrilled that he can go and play with other children, and have relations with other kids his age.
Although we - as his parents - worry a lot about the future, we have been convinced by our little, happy kid that the best therapy is to spend our time together, to have a lot of fun and to experience Sebastians - and now also Marie-Louises - progress in life.
Here is a recent photo of Marie-Louise, Sebastian and Tue:
8 comments:
Congrats on the new edition !!
Congratulations for the beautiful family you have! And i'm sure that your kids are going to grow healthy and succeed in life!
Best wishes!
Letícia Uto- Brazil
Your family is really beautiful, very strong, congratulations. I wish my best for all of you!
I have 2 boys (2 and 9 years old)and they're my life. I understand you, stay with God!
Gisely- Sao Paulo- Brazil
http://casadagi.blogspot.com
http://addictinvestor.blogspot.com
HEY! i accidentally dropped by. nice blog. nice picture. And congratulations on the new member of the family! she's adorable.aww
Your family is just beautiful! Marie-Louise is so adorable and you can tell Sebastian is just in love with her. So cute! Wesley was standing next to me and saw a picture of Sebastian and said, "hey, that's me"! I told him it's not him but he wears a hearing aid just like his. Wes thought that was pretty cool. Hopefully someday they will get to be friends at Camp Sunshine. They can compare hearing aids!
My daughter is chasing Wesley around the house right now pretending to shake fish food on his head. See what you have to look forward to? HA! I'm so glad the kids are doing well. Pass along hugs from us! I have to go save Wesley's head now.
Hello Guys,
the new blog is nice! Congratulations on your new member of the family...very beautiful. You guys look like such a happy family.
Love Charisse
(FA Adult - Australia)
Hello Tue, Kristine, Sebastion and Marie-Louise! Congratulations Sebastion on becoming a big brother and Welcome to the world Marie-Louise!
I like the new site and it's great to see a photos of most of the family--now we just need a picture of Kristine! My favorite is the one of Sebastion reading to Marie-Lousie. So sweet!
-Rachel (Corbett, Oregon, USA)
mom to Benjamin and angel Nina
Congrats on your new blog and welcome to the blogosphere. We are looking forward to following you. Keep publishing plenty of pics!
Cheers
Stig
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