The end of 2014 showed us how fragile life can be when at Christmas our little boy Aksel went from a perfectly healthy & happy 2.5 year old to almost dying of a rare and often fatal disease called HLH.
On the morning of December 19th, Aksel had a seizure that almost took his life and in the afternoon doctors told us there was 70% risk he would not survive. We later found out that doctors at the Intensive Care Unit actually thought it was 90% he would die, since the HLH had already caused full blown organ failure and internal bleeding... But our little Viking never gave up and after battling his illness for 2 weeks at Miami Children's Hospital, always with his Mama & Pappa by his side 24/7, Aksel was able to start to recover enough to go home.
Aksel is currently stable, but he is not allowed to go to school, public playgrounds or play with his friends, since any small virus could reactivate his HLH and be fatal for him. This is why Aksel needs your help urgently.
The only cure for Aksel is a BONE MARROW TRANSPLANT (a very simple and safe procedure for the donor), but at the moment doctors have not yet found a good match.
Little is known about this disease and a lot of research is being done at the moment to find an alternative cure. HLH is difficult to diagnose and very often fatal, many children under the age of two die suddenly because parents and doctors do not realise that they have HLH!
The most likely HLA match for Aksel is someone of mixed northern European & Latin american heritage, so if that is you, or you know someone and/or can reach someone with this genetic background via your network that would be much appreciated!
Carla, Fredrik, Aksel and our families & loved ones.
Please help us by joining the bone marrow registry.
Follow the appropriate link for your country to contact your local Bone Marrow Registry for information on getting a cheek swab to determine if you're a match for Aksel.
If you're in the US or Puerto Rico, the Icla Da Silva Foundation, working with Be The Match®, the largest and most diverse marrow registry in the world, will send you a kit where a quick swab of the cheek will let us know if you and Aksel are a match.
Because of the risk of contracting another virus, which could re-activate his HLH and be fatal, Aksel is not allowed to go to school or play in public playgrounds, etc.
Helping our son overcome his illness by finding a match for him has become our life’s purpose.
Please help us by joining the marrow registry.
You can also help many other children around the world in need of a bone marrow transplant by making a monetary donation to the Be The Match Foundation.
* Monetary donations are not for Aksel or his treatment. They go directly to help the Be The Match Foundation.