J&Nis creating a blog about our courageous boy with Diamond-Blackfan Anemia
Our entry level to patreon access to V's blog. We'll share notes on language and motor skills, sond-feeding, blood transfusions, desferal treatment and lots of positive articles on great little adventures.
Besides being busy parents, we're also photographers. We live in a very scenic part of Sweden, and thought we could offer some high quality landscape photo prints suitable for framing and decoration as a thank you/reward for super-lovely patreons. Format is approx. 45 by 60cm, and there is a selection of images available (please see website for details), both in colour and black and white. In this tier we will send you one image out of the available selection every two months.
About V: Born almost two months early, weighing 1165grams, and having a genetic blood disorder named Diamond-Blackfan Anemia (DBA) means he can not make his own red blood cells. This requires regular blood transfusions every three to four weeks (he's had about 50-60 so far and over 100 hospital visits). At 3.5 years, he had a near-fatal brain concussion, but due to emergency helicopter and superb staff and successful operation in Uppsala he made it through without lasting damage. Despite the initial low odds, he's developing strongly and shares his adventures with others to inspire and hopefully, one-day beat DBA for good.