This is
VIKTORIOUS
Welcome to our family blog about our awesome and curious little boy Viktor who has a disease named Diamond-Blackfan Anemia* and brings happiness to everyone he meets.
*Viktor is managing this bravely with great support by lovely medical professionals)
*Diamond Blackfan anemia (DBA) is a rare blood disorder. Children with DBA do not make enough red blood cells. These cells carry oxygen to all other cells in the body.
Blood cells are made in the bone marrow, the spongy insides of long bones. In children with DBA, many of the cells that would have become red blood cells die before they develop.

Categorised content: (see blog navigation link for all articles)

Diamond Blackfan Anemia, blood transfusions and dechalation therapy
Diamond Blackfan Anemia, blood transfusions and dechalation therapy

This section covers blog posts and links to medical articles about this rare genetic condition, the required treatments, and scientific research efforts which gives us hope this can one day be overcome.

Outdoor Adventures
Outdoor Adventures

Our family loves the outdoors and every season of it. From dog walks and short hiking/camping trips a few times a year, to enjoy snow in the wintertime - building snow caves, cross-country, and alpine skiing or snow show walkabouts through the forests.   

Building Projects
Building Projects

V has from an early age had a keen interest in how things work. Tools and anything that can be pressed, turned, switched etc. has caught his interest. One of his most favourite shows is Curious George and now that he's into TinyBob Small Machines (and the rest of that great education app series) on the iPad, he's soaking up knowledge about how things interact. This category covers all sorts of large and small building projects he's helping out with or that we build with him.

Fun with furry friends
Fun with furry friends

V loves animals, especially our Rhodesian Ridgeback dog and cats,  but also birds and insects including arachnoids. Pretty much any animal apart from slugs, tics, flies or mosquitos.

Travels
Travels

Currently, V can not travel by air, but we all flew to Nice when he was two years old and had a great vacation there. We love going on road trips though, especially when Uncle Nik is visiting! 

Friends and Visitors
Friends and Visitors

Fun with friends and visitors in no particular category.

Compression
Compression

When V was 3.5 years old, he suffered a compression caused by a ruptured thrombosis in his central brain area just before midnight on September 22nd, 2016. We discovered he was unresponsive when we checked on him before going to bed and called 112. The fast medical response performed by the ambulance crew (15min from Leksand to Siljansnäs, absolute heroes!), the ER team at Falu Lasarett, the Rescue Helicopter team and finally the Uppsala operation staff and children's intensive care unit (BIVA) saved his life and allowed him to make a full recovery. 

Premature born, sond feeding, early operations
Premature born, sond feeding, early operations

Prematurely born babies are often only "followed" for the first 2-3 years. The general perception is "most have caught up by the time they're two". What matters is not a comparison, but the progress individually. And that's where it is nothing short of fascinating. While V has had some delays, he generally caught up with all basic and fine motor skills by the time he was three, and while some nasal pronunciation remains more prominent than in some of his peers, he's very good with words and sentences in English as his first language, and has no problems keeping up with Swedish in school, and knows quite a few words and can count in German as well :-) 

Viktorious goals, hopes and ambitions

Hopes:

That the safe correction of the genetic code causing DBA for V and others becomes feasible before 2030. Exponential technologies are merging and accelerating each other every day!

Ambitions & goals:

By raising awareness and inspire funding for required foundation science and new generation treatments (such as CRISPR) with the aspiration that one day, Viktor and others won't require regular ongoing blood transfusions and related complications.

For Medical Professionals:
Are you interested in learning more about Viktor's journey for your own research?

We learned most premature born follow-up usually ends after the babies second year, and information and data about longer term development differences is not so easy to get hold of.

If you are working in the areas of DBA, stroke in young children, or the longterm developmental progress of prematurely born children and have an interest in V's case, we are happy to share information and data for any vetted/official program, just get in touch from your official medical work email!

This site is mainly for family & friends, but also for interested medical professionals or other parents whose kids might be diagnosed with DBA or similar complications requiring regular blood transfusions and/or sond feeding.

New posts are added regularly in the categories shown on this page, but for a chronological and more complete list, click the blog navigation link!

Disclaimer: Our blog covers our personal journey - it might contain some hints, some relief, some ideas - but in no way should any content herein be seen as recommendations, treatment advice, or anything else - if you have a child with this condition, always consult with your professional medical contacts if in doubt. All content is for informational purpose only. Enjoy!
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