“Your Presentation will be Inspirational to Anyone Actually Listening”
A Life Beyond Expectations
Adahlia was born on a full moon in the summer of 2012. She was pronounced perfect. Her parents agreed. A wonderful life full of love and adventure was planned for her. Her kooky “fortune” was stuck under a magnet on the fridge with a little smile and shake of the head. Neither parent had any intention of “presenting” their child. This was no Lion King.
No one could have imagined that Adahlia’s first adventure would be a battle for her life. As the weeks passed, Adahlia’s mom became more and more convinced that something was afflicting her child. When Adahlia was 1.5 months old, she insisted that a pediatrician run a blood test. Adahlia’s hemaglobin (red cell count) was only 1.9. The pediatrician returned to their room saying: “Go to the ER immediately - and do not stop on the way!”
With such a low blood count, Adahlia’s body was fighting to stay alive. Her heart was racing like a hummingbird, struggling to keep her brain, liver, and kidneys oxygenated. At the ER, nurses fought to hold Adahlia down and locate tiny veins to insert even tinier IVs. Adahlia swung fists and feet, howling and climbing like a monkey to the top of her mom’s head, fighting the nurses’ every effort to pin her down.
Frankly, there was a lot of fighting going on.
But, Adahlia lived.
And won her first battle. (The nurses and doctors won, too. It was a shared victory.)
Many tests were run. Adahlia was referred to Pediatric Hematology and Oncology specialists. Her mom glared at the well-meaning hematologist who said the problem didn’t seem to be viral and predicted: “This will be a marathon, not a sprint.”
Because no one likes a marathon. Long-distance running stinks. Anyone with any sanity much prefers soccer and running in short bursts with a well-defined goal.
Unfortunately, it turned out that the hematologist’s prediction was accurate and he had missed out on a career in weather. For, nine months later, Adahlia was finally diagnosed with Diamond-Blackfan Anemia, a blood disorder named after the two scientists who discovered it.
A diagnosis of DBA means you don’t make your own red blood cells. It is an extremely rare, confounding, and currently incurable blood disorder associated with a malfunctioning gene. It is considered a type of bone marrow failure. To survive, Adahlia lives month-to-month on blood donation. Only approximately 1,000 persons are alive with DBA in the entire world.
Honestly, it was (and remains) pretty miserable - and unbelievable - news. Adahlia is a smart, kind, strong, funny, and ferocious kid. Nevertheless, like clockwork, she grows weaker with each passing week. Right about the time she starts having trouble focusing and following directions (and can’t run as far and fast as her friends anymore) the generosity of a couple strangers gives her 4 more weeks of life.
These are our battles and miracles (count them) #2-372...
There are complications, of course, to having your body continually stressed and saved by someone else’s blood. She must take daily medications she finds disgusting. But, it could have been worse: The researchers who discovered DBA could have been named Drs. Stinky and Poop. “Diamond Blackfan Anemia” is so much classier.
While DBA is a large part of Adahlia’s life, it is far from defining. Adahlia is an adventurer, artist, athlete, advocate, storywriter, and friend. She dances with the Columbia Classical Ballet, ice skates, surfs, plays soccer, and speaks French and Mandarin. She has a strong sense of justice and a deep love of animals and nature. She appreciates the finer things in life, like fashion, Belgian chocolate, and rollercoasters. She loves to teach younger kids new skills and gets excited when she finds ways to be of service to her mom and her teachers. She hopes you like her jewelry and art - and that her life brings you inspiration and joy!
“We desperately need a cure for DBA. But we don’t need a cure for Adahlia. There is absolutely nothing wrong with her. It’s important that kids realize that distinction. Their diagnosis is their challenge, not their definition.”
What’s next for Adahlia?
The closest thing to a cure right now is a bone marrow transplant (BMT). In the future, gene therapy will be an option. Adahlia has one perfect bone marrow match in the world and potential transplant date of Spring 2023. Her donor is a young woman in the Netherlands. It takes a special person to be willing to give kids like Adahlia a chance at life untethered to IVs… (miracle #407)…
However, it is worth noting that while BMT can cure the anemia or blood aspect of DBA, it does not correct any implicated genes, which continue to struggle to make proteins needed for a healthy skeleton and gut. Having a malfunctioning gene puts Adahlia at a very high risk for cancer. Many DBA children have lost limbs and lives to both blood and solid cancers.
Researchers in Europe are ready to trial gene therapy as a cure for DBA. However, it remains an experimental procedure. More funding is required to finalize the development of gene therapy and bring it safely to the children of the United States.
On this website:
We redefine mental constructs.
Because this world needs it.
Because when we are told: “You’re in for a marathon, not a sprint,” we hear a mountain rising out of the morning mist, and we solemnly start to plan our climb.
When we are told: “Your child is destined for the valleys of life, not for the mountain peaks,” we check our watches and confirm we’ve got water, sunscreen, and snacks. We find out if the valley has a river and if so, we plan to add on a kayaking trip, too.
And when others speak in ways that de-fine and dishearten, we hear a challenge to harness all our energy and every ounce of who we are into something so pure and powerful it can redefine reality.
What if:
… what we think is weakness is a superpower?
… what we think is bad is good?
… the purpose of life is not “survival of the fittest,” but enrichment of the soul?
Our Purpose:
We hope that sharing Adahlia’s life — and our interpretation of her health challenge — will inspire others to live their lives to the fullest for however long they have been gifted. We hope to encourage the smashing of definitions, of limitations, of pigeonholes, and boxes. We hope visitors will be reminded to seize each moment, and to not put off until tomorrow what can be experienced today. To not be daunted by immense challenge, incurable disorders, or impossible odds. We hope they ignore the easy road and choose the ones prowled by lions. To use each blink to renew their eyes so they see the world afresh.
There is Power in how you choose to approach things. It can change your life. The question is: Are you listening?
The DBA Foundation
If you have faced hardship, you probably discovered that having a sense of humor helps. A lot. But it is equally vital to have people in your corner. The DBA Foundation provides two types of necessary support for kids like Adahlia: Research Funding and Patient/Family Support.
Research: DBA is so rare that there is very little funding for it. Medical research follows a simple algorithm: The more people who suffer from a disease, the more money allocated towards finding a cure. There are only approximately 1,000 people alive with DBA at any given time.
So, we raise our own funds. We are blessed to have a handful of tireless researchers who are dedicated - absolutely dedicated - to curing DBA. They are getting attention, gaining traction, and receiving grants. In the last few years, they have researched nutritional supplements, repurposed pharmaceuticals, refined bone marrow transplant, and advanced gene therapy for DBA. In the last few years, the DBA Foundation has funded over 70 research projects for DBA!
The DBA Foundation also connects parents of children diagnosed with DBA together so that we can support each other. This costs next to nothing. But the connections are essential.
Want to be one of Adahlia’s Angels? —