Most parents treasure the idea that their child is one-of-a-kind. Aksel’s mom and dad, however, desperately hope their little boy is not.
Like any 3-year-old, Aksel has energy to burn. But for this toddler, there’s no swinging from the monkey bars with other kids. No trips to the zoo. No pre-school classmates to play superheroes or dig in the sandbox with. No buddies coming over to ride trikes and toss back a juice box or two.
Aksel lives in near seclusion, 90 percent quarantined at his Miami home because of a life-threatening blood disease that has corrupted his immune system. Exposure to even minor viruses or bacterial infections could likely reactivate his disease and prove fatal.
There’s a cure. But it will take a stranger to step forward.
While a marrow transplant can cure Aksel, doctors so far can’t find a matching marrow donor. Turns out few registered marrow donors anywhere on the planet represent the genetic combination – Scandinavian and South American – that is Aksel.
No one in his family is a marrow match. There’s no match on Be The Match Registry®, the U.S. listing of volunteer marrow donors, and international searches haven’t been encouraging.
Aksel’s need for a marrow donor is critical. So his parents, Fredrik and Carla, are urgently searching the world over to find someone to save their “little Viking,” as they call him.
There’s power in your ancestry that makes your marrow life-saving and Aksel’s family is hoping you’ll use it. If you’re between 18 and 44 – especially if you have Scandinavian and/or South American heritage – please visit http://join.BeTheMatch.org/SaveAksel and join the marrow registry. You could be the cure for Aksel or patients like him.
Complete the online health form and you’ll receive a swab kit in the mail. Swab the inside of your cheeks and mail it back in the postage-paid envelope. It’s that easy.
Every year, 14,000 patients in the U.S. with leukemia, sickle cell and other blood diseases search for a marrow donor to save their lives. Patients are more likely to match someone who shares their heritage, but family isn’t enough. Most of us (70 percent) won’t have a match in the family. Patients need their communities, indeed the world, to step up.
Typically healthy, Aksel began coming down with one persistent bug after another in November 2014. Then in December, he inexplicably suffered a seizure and organ failure. A bizarre convergence of three viruses had triggered hemophagocytic lymphohistiocytosis or HLH – the blood disease that is now threatening his life.
Aksel spent hours in surgery and nearly two weeks in the pediatric intensive care unit at Miami Children’s Hospital. Doctors didn’t expect him to survive, but Fredrik and Carla’s “little Viking” fought his way back home.
Home definitely beats a hospital room, but until a marrow donor is found, home has become a necessary bubble of isolation. And, good luck explaining the “necessary” part to a 3-year-old. While upbeat and positive, Aksel is lonely – especially for other children to play with.
His typical day includes bits of normal life. But even those bits come with restrictions.
For instance, Aksel goes on walks in the neighborhood to get fresh air and see new faces. While he can say ‘hello’ to people, he must keep his distance and have no contact. His parents learned the hard way to bypass walking by the park, outdoor birthday parties or blocks where lots of children play. If Aksel sees kids playing, he cries and cries – and pleads to join them. “It’s so heartbreaking,” said Carla.
The complex where he lives has an indoor and outdoor park, but Aksel can’t play when other kids are there. He can only play by himself and only if the equipment has been thoroughly cleaned and disinfected.
There are a few children Aksel may play with one-on-one, but only under the strictest of conditions. First, the child must be screened for 72 hours before any visit to ensure he or she has no sign of illness. If cleared, the playdate must wear very clean socks and leave their shoes outside. Once in the house, he or she must visit the “sterile bar” to get disinfected and fitted with a mask. Even with all that, the playdates are short and contact is limited.
Thank goodness for Onyx, Aksel’s trusted furry friend. This Shih Tzu keeps Aksel company, watches over him without getting too close, resists the urge to lick and even tolerates getting her paws and snout disinfected daily. They are inseparable.
“We try to make his everyday life ‘sort of normal’ – as much as possible, while at the same time keeping him safe. He doesn’t understand and it feels awful as a parent. But we almost lost him. Catching a cold could bring us right back to the ICU,” said Carla.
Burst Aksel’s Bubble
Clearly Aksel is a fighter. He’s already beat seizures, organ failure and internal bleeding. But he could use some re-enforcements right about now. If you are unable to join the marrow registry, there’s another way to help – and it would instantly put a smile on Aksel’s face.
Child or adult, please help us #BurstAkselsBubble. Send him a photo or video via Facebook, Twitter, or Instagram playing like a 3-year-old and wishing him well.
Aksel would cherish playing with a world of new buddies, if only virtually, for now.
What’s fun to Aksel? He loves dancing, singing and the rain. Sing him a goofy song or show him your dance moves. He’s partial to Pharrell Williams’ “Happy,” Madagascar’s “I like to Move It, Move It” and “Gangnam Style.” Stomp in some rain puddles for him – the messier the better. His dad works with Formula One racing and Aksel loves cars. Put on a Hot Wheels® race for him.
Does your dog do tricks? Put on a show for Aksel (and Onyx, too). Build a secret fort and invite him in. Rally a convoy of trikes and parade around your block wishing Aksel well. Create a special message for him with sidewalk chalk or finger paint. He misses the swimming pool – the tub is as close as he gets now – so do some goofy dives for him.
“If the public would do this for Aksel, especially other children, it would mean so much to us,” Carla said. “You’d be helping my little boy forget that his life right now is only ‘sort of normal.’ You’d be adding more smiles to his day.”
And, by the way, Aksel has a great smile.