IOWA CITY, Iowa (KWWL) – 11-year-old Malee Crider-Jensen is battling a rare, genetic disease at a Chicago hospital. And her family battles the financial strain that comes with medical costs, on top of being out-of-state for a substantial amount of time.
Malee has Alagille Syndrome which has caused her to face several serious health issues and operations.
In November 2018, Malee was airlifted from the University of Iowa Hospitals and Clinics to a children’s hospital in Chicago to wait for a liver transplant. In July, Malee and her family got the news that she would get the liver transplant. She had the operation, but several complications have resulted in additional surgeries, as well as many blood transfusions and dialysis. She remains in critical condition.
“Malee is incredibly intelligent, introspective, creative, determined, persistent and sassy,” said her mom, Tiffany. “I also asked her to describe herself for this story and she said, ‘I’m weird in a good way and I’m brutiful.'”
“Brutiful” comes from a Glennon Doyle Melton quote meaning life can be both brutal and beautiful at the same time.
And, yes, it can be brutal in many ways. As health care goes, Malee’s medical costs are extremely expensive and growing by the day. According to family friend, Amanda Green, their hospital bills have already exceeded $800,000.
“Those close to this family have all watched, clutching our chests from the sidelines, as one serious complication after another attempted to take the fight out of Malee. And somehow, this tiny little adolescent frame has withstood blow after blow, only to come out the other side still smiling and joking,” said Green. “She is truly the strongest human I’ve personally met and she deserves every extra ounce of support we can muster from our community.”
Another obstacle the family faces is that Tiffany will soon lose her job as a nurse in Cedar Rapids, as she needs to be by her daughter’s side in Chicago understandably. Tiffany explains the situation via email to KWWL:
“Unfortunately, in May of 2017, I was injured during my shift and was placed on light duty until November of 2018 where I was determined to have permanent injury and was not able to return to my job as a nurse. I was able to take a position that fit my limitations, but unfortunately, all of my FMLA in addition to one of my three, 30-day blocks of medical leave were utilized for my work injury. I have had to use my last two 30 day blocks to be present with Malee during these critical times and am now left with no more available leave. My last day of medical leave ends on 8/9 and at that point I will be without employment.”
It’s clear to see this is a family that’s facing multiple hardships. Additionally, Malee’s twin is on the autism spectrum and requires specialized care and therapies. But they are strong and facing these challenges together. They could use the community’s support. If you would like to donate to help Malee and her family, visit the GoFundMe page set up for them by Green here: https://www.gofundme.com/f/helpmaleeandfam
And learn more about Alagille Syndrome here: https://alagille.org/
KWWL wishes Malee and her family the very best.