Danika's Story

Danika's Story

Let's get to know Danika!

Danika is a member of our community here in El Paso, Texas. She unfortunately struggles with Thalassemia Major, and the difficult side effects the condition causes. At first sight, she's a sweet and healthy child. But she has gone through struggles for years, and continues to as doctors do what they can to fully diagnose and treat her. 

Regardless of her struggles, she does her best to live a normal life and not let go of her spunk.

Thalassemia Major's Effect

Danika has been recently diagnosed with Beta Thalassemia Major, commonly referred to as just Thalassemia Major. However, her condition's severity lies on the higher end of the spectrum. She requires frequent blood transfusions, blood work for testing, and has a severely weakened immune system as a consequence. She has spent so much of her life in the hospital due to this and its side effects, and yet they have many questions that remain unanswered. As they continue to research and attend appointments, including many out of state visits, they continue to accrue medical debt. Due to the rarity of this genetic condition, the treatment options are not widely accessible, and can be extremely expensive. 

More information regarding the condition can be found here.

Danika's mother, Audrey, continues to research what can be done for her daughter, but a lot of this requires medical assistance and travel. This travel and lodging expense is quite taxing for her, as she also lost her husband about three years ago from Leukemia, brought on by his weakened immune system, and continues to shoulder the burden for her family on her own.

How did she get here?

As previously mentioned, Danika was only recently diagnosed with the genetic condition, but she has struggled with this disease since she was one. Her father recently passed away, in his thirties, which is a fear Audrey has for her daughter. The disease is known for a shorter lifespan, and doctors have quoted a prognosis of 30 years. Audrey is terrified of her daughter reaching the same fate as her late husband. His own decline was sudden and severe, going from perfectly normal seeming, to passing away in the hospital days into his stay once Leukemia began to ravage him and his weakened immune system. Audrey has shared a photo from his first day in the hospital, but has chosen to spare the later days photos as the reality is difficult to look at. 

Audrey was forced to watch her husband struggling in his last days, and she refuses to allow the same fate to come to her daughter. Luckily, they have caught this condition early in Danika as doctors used the circumstances surrounding her father's death to determine diagnosis, and now have the head-start on the treatment process. Regardless of this advantage, the process is incredibly difficult. 

Danika's Struggle

Danika does not simply struggle with iron transfusions she has to regularly undergo, she battles the collateral damage the condition has caused. She has major vitamin deficiencies, her body struggles to retain nutrients, and she can count herself lucky if she is able to gain two pounds or more a year. 

Since this condition also leaves those affected susceptible to frequent and sever infections, she has also struggled with recurring pneumonia and the damage it causes to her lungs (like mass growths, and collapse). To spare some of the more gruesome details, she constantly combats internal bleeding and stomach related issues as well.  

Doctors here in El Paso have told Audrey that Danika needs to be seen by a Genetic Pediatric Specialist, which El Paso does not have. They have exhausted all resources and tests currently available to them here in El Paso, so Audrey will be taking Danika to Phoenix to be seen at the Thalassemia Clinic in their Children's Hospital. This is where the fundraising comes in.

Time to Fundraise!

Audrey has decided that she would like to run a fundraiser to help cover the expenses they continue to accrue, like the travel and treatment costs, but she wanted it to be fun. 

Danika also plays baseball when she is able to, and her current coach, Nick, recently found out about her conditions. Being a biker, he immediately thought of how our community comes together to help each other when in need. So Audrey and Nick came to us, and with the combined efforts of us as well as Guardians of the Children Sun City Chapter, she's holding a water party! 

So come out and join us on August 10th, from 10am to 3pm, to raise some money for Danika. With a $5 admission donation per person, you can explore the event and gather a meal while you're here. They will be having a raffle with a variety of options to choose from. Activities will be done with tickets, sold day of the event. Everyone is welcome to join! Bring your family, bring your friends, bring your friends family even! All proceeds go directly to helping Danika, and you get to have a great time. It's a win, win!

We might even have some members of our own community available to dunk in the tank...