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Aksel the Great

Every now and again, there is a fairytale ending to a long and arduous tale of woe.  This is one of those stories worth telling, if only for the sheer inspiration of its character line-up.  The superhero is Aksel Johnsson, the Great Conqueror.

It all started with an impossible task that the mighty superhero was required to perform, against overwhelming odds, with limited resources; and,of course, enduring some dramatic flourishes along the journey.  At two-and-a-half years old, Aksel Johnsson’s life had only just begun when he was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH).  A genetic condition, HLH affects the immune system in which damaged cells are not being removed from the body as needed.  A normal body does this naturally, but Aksel’s condition caused his immune system to become overstimulated and rendered this process ineffective.  This in turn caused continuous damage to his tissues and organs, such as bone marrow, which lead to further complications in his little body.

At such a young age, the only chance Aksel had in overcoming the rare condition was to receive a successful bone marrow transplant and allow the body a fair chance at recovery.  In a great show of strength, Aksel’s dedicated fighting force, his Mamma Carla-Prado, and his Pappa Fredrik, rallied together to find a bone marrow donor.  From their home in Miami, Florida, the Scandanavian-South American family fought the HLH dragon, encouraging one another to keep going, to stay strong and to think big.  His parents described Aksel with words like ‘viking strong’ and ‘super hero’ as their brave son dealt with the plethora of challenges that unfolded.

A conquering attitude makes a whole lot of difference, as proved by the positive contributions from each member of Team Aksel along the way.  The home team worked tirelessly to find a donor for Aksel, drawing on every resource available and exploring every avenue.  They created their own website, shared the journey on a Facebook page and even reached out to the local media for support.  The Miami Heat feature helped spread awareness, widening the search for a bone marrow donor.

The heroes also joined hands with Malena Laughlin of the Icla da Silva Foundation, in the tedious search for a perfect match for Aksel.  The foundation is the largest recruitment center for the Be the Match bone marrow registry in the United States.  Unfortunately, not one of the 12 million registered donors presented as a compatible match at first.

Slowly but surely, however, the Icla da Silva Foundation was able to complete 165 marrow drives in honor of Aksel and our little superhero worked incredibly hard to contribute towards this process.  Miraculously, this led to a staggering 3,929 potential new bone marrow donors being registered to the Be The Match Registry.  Potential donors were signing up from the United States, Sweden, Monaco and the United Kingdom, all for Aksel.  What a superb legacy was being built by a viking-strong Aksel in his fight for life!

Shortly thereafter, Aksel’s doctor insisted on a swift course of action.  They could wait no longer for a perfect match to be found.  At a 60% match, Fredrik, Aksel’s father, began to prepare for the bone marrow transplant.  With the last-minute twist of fate every fairytale needs, a donor joined the registry and presented a 8 out of 10 match!  The 44-year-old hero agreed to donate his stem cells to Aksel, sparking celebrations all round as hope held out. Aksel received the bone marrow transplant in July 2016.

The viking-strong superhero was reborn at the Cincinnati Children’s hospital as his body was given a second chance at life.  A few months after the transplant, Aksel was showing reports of low engraftment – the process where new blood-forming cells start to grow and create healthy blood stem cells.   Never wavering from his chosen course, Aksel donned on his best viking face and a positive attitude as he took things one day at a time.

Victorious and inspirational, Aksel won his fight.  As at April 2017, his bone marrow transplant engraftment reached 100%.  Even though his immune system is still recovering, his prognosis remains firmly on the right track.   He will need continued treatment for another year, but Aksel and his hero team have beaten the HLH dragon.

Aksel the Great may only be a little boy, but strength and honor are boldly displayed in the way he lives.  On May 1, 2017, Aksel turned five.  The hero and his family still have a long road to walk, but the little viking continues to display a superhero attitude and he is getting stronger everyday – viking strong.  Aksel’s future looks bright.

If you were as excited as we were to hear about Aksel’s victory over HLH, please consider joining the registry as a potential bone marrow donor.  You could be the hero to someone like Aksel and save a life.  The process is simple.

If you are unable to register as a donor, but still wish to help, please consider supporting the Icla da Silva Foundation in other ways.

 

 

Patient Story: Julian Morales

Cowabunga, dude!

Early morning traffic on the speedway is already in full swing and the Miami summer sunshine radiates on the tarmac, bouncing onto the palm trees that line the streets.  Nearby mangrove forests are teeming with life as the birds greet another spectacular sunrise on the East Coast.  Beautiful golden rays illuminate today’s gift: more time.

Michaelangelo, Leonardo, Raphael and Donatello, four pizza-loving turtle heroes, are rumored to live in the sewers around here; at least in the active imagination of this fun-loving five-year-old.  As another balmy day sets in for the small community of Homestead, Florida, Julian Morales and his amazing family make their way towards another busy day.  For chocolate ice cream-loving Julian, Florida’s summer afternoon heat should be the perfect excuse to ask Mom for a cold treat to tingle the taste buds.  Will the cheeky smile which makes his eyes sparkle do the trick?

Julian has spent most of his five years in this sunny paradise; with his Mom, Mayra, and his Dad, Dany.  He has a wonderful relationship with his doting parents and thinks of his sister, Bella, as one of his best friends in the whole wide world.  Perhaps there are no masked Teenage Mutant Ninja Turtles sporting nunchucks, katanas or a bo staff around here after all; but for little Julian Morales there are plenty of other heroes on the move around the city.

Unlike his peers, Julian’s first five years have been tough.  It has been an emotional roller coaster for his dedicated parents as a search for a diagnosis of Julian’s condition has gathered momentum.  Together with a supportive church and community, the journey has taken the family through a number of trying obstacles.

bone marrow patient

Finally, after a year of extensive visits to various health professionals, it was advised the family take a trip up to Boston.  Here the brilliant specialists at the Dana-Farber Cancer Institute in Boston, Massachusetts were able to confirm the diagnosis as a rare condition called Dyskeratosis Congenita (DKC).  This is a bone marrow failure disorder and results in low red or white blood cell counts, low platelet levels or a mixture of these three conditions.

Julian cannot attend school for the foreseeable future as his strained immune system is severely compromised.  Instead, he spends time at home with the family he loves; learning, reading and playing the way most children his age love to do.  He also adores his church community at Christ Fellowship, Miami.  Check out his awesome puppet show about Adam, Eve and the snake-snake-snake here.

A bone marrow match would enable his doctors to cure his blood condition, the first step towards dealing with the Dyskeratosis Congenita itself.  Ancestry and genetics determine the protein mixtures in the blood.  Unfortunately, since Julian is of both Mexican and Nicaraguan descent, neither of his parents presents as a perfect bone marrow match.   A consolation for Julian, however, is that his condition was diagnosed a little earlier than most, immediately kicking off the search for a suitable donor.

The Morales family teamed up with Malena Laughlin of the Icla da Silva Foundation on an urgent quest to find a bone marrow donor for Julian.  Being the largest recruitment center for the Be The Match Registry in the United States, the Icla da Silva Foundation is dedicated to helping people like Julian.  In fact, people of mixed heritage are a top priority for the foundation, since these patients only have access to a limited genetic pool of volunteer marrow donors in the bone marrow registry.

bone marrow drive

To date, there have been 96 Bone Marrow Drives to find a match for Julian, which resulted in an impressive count of 1100 potential donors.  The perfect match for Julian is yet to be found, however, and his team stands by him, persevering in hope. Until a suitable match is discovered, the family needs to regularly travel up to specialists at the Dana-Farber Cancer Institute in Boston, Massachusetts.

Despite the fact Julian’s perfect bone marrow match is still to be found, the Bone Marrow Drives miraculously provided matches for a number of other bone marrow patients along the way.  The time and effort of a dedicated family and community team, together with the Icla da Silva Foundation, is never wasted.  Would you consider registering to become a bone marrow donor for Julian and others like him?  The process is simple and the procedure is painless.

Register as a bone marrow donor with the Be The Match Registry now.

Follow Julian’s story on his Facebook page for further updates on the Morales family’s search for a match.  As Julian’s illness progresses, complications will increase.  Julian needs a donor as soon as possible.  Please help us make a difference for Julian and his family.

If is it not possible for you to become a bone marrow donor, the Morales family has set up a GoFundMe account.  Any and all contributions to the fund are welcome.  These generous donations support Julian’s numerous medical trips to Boston and his ongoing medical expenses not covered by insurance.