Viktor has Diamond-Blackfan Anaemia and is a happy and caring boy interested in animals, lego, technology, being outdoors and exploring things, and who brings happiness to everyone he meets.
Through our blog we share the challenges (see hospital visits) DBA brings but also, importantly, the many fun things we can do despite the long-term health issues. As parents, we were anxious at first about what Viktor would be able to do, being both born early in week 31+5 weighting only 1165g and also having DBA. Maybe our blog can help reduce some anxiety for other parents going through similar experiences.
What is Diamond Blackfan Anemia?
Diamond Blackfan Anaemia (DBA) is a rare blood disorder. Red blood cells carry oxygen to all other cells in the body - without them, people can't live. Red blood cells are normally 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 fail to develop. So people like Viktor need life-long blood transfusions to survive. Viktor needs a transfusion every three weeks. A HUGE thank you to everyone who donates blood so Viktor and other patients can live!
PS:
TACK!
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Viktor has DBA, so we have many hospital visits over the year for blood transfusions, extra check-ups and a few operations and more specialised tests. V actually enjoys going to the hospital, thanks to amazingly friendly, patient, professional staff at Falu Lasarett as well as the superb "Överlekare" (Head of Play & Games) Mats & Helena. If you'd like to learn more about DBA and the great progress that is being made globablly to treat genetic and blood disorders, visit the Science News section. We are confident this can one day be overcome by the time V is a young adult.
Our family loves the outdoors and every season of it. From dog walks and short hiking/camping trips a few times a year,
to wintertime fun - building snow caves, alpine skiing and snow-shoeing walkabouts through the forests.
V is a walking talking animal expert already, it is amazing how much little ones can learn when they take an interest in something.
In V's case, that's animals, animal tracks, animal poo and eating marks. At the National History Museum he identified a whole load of animals
he knew about from his favourite series series Octonauts, Wild Kratts and Coyote Peterson - I think we've seen them all.
Current favourites are Survivor Man and Bear Grylls :-)
We're lucky to live close to Naturum Dalarna, a beautiful exhibition about the local wildlife and flora, as well as offering an awesome view of lake Siljan.
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 when he was little was Curious George (and Peppa Pig, George aka "Piggy" still being his most treasured soft-toy!) 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.
V loves animals, especially growing up with our lovely Rhodesian Ridgeback dog (sadly gone now), everything from pigs to cats, birds and insects including arachnoids. Pretty much any animal apart from slugs, tics, flies or mosquitos. But that's ok :-)
We love going on road trips (now with our "DalaCalifornia Adventure Van", yay!), especially when Uncle Nik is visiting! Currently V can not travel by air, but when he was two years old we flew to Nice and had a great vacation there! Living in Sweden and having all of Europe within driving distance(ish), we are doing fine just travelling by roads, ferries and trains!
Fun with friends and visitors in no particular category.
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.
Week 31+5
1165g
On a "this is what a baby can normally do at age x", V was sometimes behind and sometimes ahead in certain areas. He walked "late", he understood communication well but "waited" longer than most to express words himself. What matters is not a comparison between kids, but the individual progress. And that was always there, depsite a grim outlook after birth and half a book on issues he got when he was released after weeks in the incubator. The general perception is prematurely born babies "have caught up by the time they're two". According to doctors we spoke to, premmies are often "followed" medically for the first 2-3 years only. While V had some delays, all basic and fine motor skills were no problem by the time he was three, now he climbs, runs, skis like any other of his classmates. He knows "big words" like "bioluminescence" and "mycelium" (V is super interested in animals and mushrooms) and speaks fluent English and Swedish and even a few German words and phrases. So yes, "he's not quite like other 1-year olds, is he?" was true. Now, who cares what he could do when he was 1?
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 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, get in touch from your official medical
work email to us or reach out to the doctors working with Viktor in Falu Lasarett.
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 converging and accelerating each other every day, so it is realistic to be hopeful about this.
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 inthe not too distant future, Viktor and others won't require regular ongoing blood transfusions and related complications. Until then, donate blood if you can - thank you!
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!
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