J&N

is creating a blog about our courageous boy with Diamond-Blackfan Anemia

0

patrons
Hello! We are J&N, and we share our little boy's journey (mostly named V in our blog) and adventures in order to raise awareness for his condition named Diamond Blackfan Anemia. But despite him having been dealt some tough cards early in life, our motivation is to celebrate his enormous joy for life by sharing his adventures and progress, and hope to inspire other parents with children dealing with long-term sicknesses, lower some anxiety regarding medical procedures and motivate doctors and researchers to share their findings. Further, we share information about DBA and medical breakthroughs related to this and similar conditions.

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.
Tiers
Stardust
$10 or more per month

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. 

Diamond
$59 or more per month

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.

Goals
0 of 100 patrons
When we reach 100 patreons, we'll be adding weekly blog posts about interesting projects, challenges and success stories exclusively for patreons.
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Hello! We are J&N, and we share our little boy's journey (mostly named V in our blog) and adventures in order to raise awareness for his condition named Diamond Blackfan Anemia. But despite him having been dealt some tough cards early in life, our motivation is to celebrate his enormous joy for life by sharing his adventures and progress, and hope to inspire other parents with children dealing with long-term sicknesses, lower some anxiety regarding medical procedures and motivate doctors and researchers to share their findings. Further, we share information about DBA and medical breakthroughs related to this and similar conditions.

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.

Recent posts by J&N

Tiers
Stardust
$10 or more per month

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. 

Diamond
$59 or more per month

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.