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I’m starting this GoFundMe for my best friends, Tim and Tyler, who are going through the most difficult time of their life with the loss of their daughter, Aubrey. This GoFundMe is to help with medical bills, funeral costs, and lost wages for them. Here’s Aubrey’s story:

Everything started on May 20, 2023 when Tyler was admitted to the hospital to monitor Aubrey in utero. During Tyler’s routine OB visit, her doctor heard Aubrey’s heart rate drop drastically low on the doppler and she was sent immediately to the hospital. Tyler spent a week in the hospital under 24/7 monitoring as Aubrey’s heartbeat continued to drop periodically. It eventually got to the point where Tyler’s OB was concerned Aubrey would be stillborn and the decision was made to deliver Aubrey via c-section. Aubrey was born at Advocate Condell in Libertyville on May 27th, 2023 at 11:25am weighing 4lbs 5oz at 36 weeks and 3 days gestation.

Hours after Aubrey’s birth, she was taken to the hospital’s special care nursery because she could not maintain her body temperature and glucose levels. In the special care nursery, it was discovered that Aubrey’s lactic acid levels were increasing for unknown reasons. Condell does not have a NICU unit, and therefore Aubrey had to be transported to a higher level hospital to care for her increasing lactic acid levels. Aubrey was transported to NorthShore ISCU in Evanston and there she stayed for 22 days until she was discharged on June 18, 2023 in stable condition, but no clear reason why her lactic acid levels were high at birth. They were able to lower them via medication in hospital. Aubrey was eventually weaned off of the medication, and remained stable in order to be discharged from Evanston. Aubrey was supposed to follow up with Lurie’s Children’s Hospital’s metabolic clinic within a couple weeks after discharge to figure out the reasoning behind her high lactic acid levels, but was deemed “not high risk” so that appointment was never scheduled. There is a long wait list to get into the clinic for non-high risk patients, and Tyler was told it wouldn’t be until November or December to schedule that appointment.

Aubrey spent a month and a half at home with mom and dad, but things slowly spiraled downward. Aubrey would not eat nearly as much as she should have, she was not gaining weight, and she slept almost 24/7. She would barely rouse in order to take a bottle. Aubrey did not gain any weight for 2 weeks and then started to lose weight. At that time, they made the decision to bring Aubrey to Advocate Children’s Hospital in Park Ridge on July 24, 2023.

There it was discovered that Aubrey’s lactic acid levels were deadly high. Aubrey spent an evening at the Park Ridge hospital until it was determined she needed more intervention and was transported to Lurie’s Children’s Hospital in Chicago on July 25, 2023. Aubrey shouldn’t have been alive when she made it to Lurie’s. Her lactic acid levels were still deadly high, her electrolytes were all out of balance, and her blood glucose level was in the 30s. She made it into the genetics/metabolic clinic of her own accord. Her genetics team immediately had Aubrey, Tyler, and Tim provide blood samples to send off for genetic testing.

On July 31, 2023, they received their genetic screening results, and it was determined what was causing all of Aubrey’s issues. She was diagnosed with an extremely rare genetic mutation of her BCS1L gene which causes an incurable and untreatable mitochondrial disease. Aubrey’s doctors believe her specific disorder is Mitochondrial Complex 3 Deficiency or possibly GRACILE-like Syndrome, but there is no way to test for a specific disorder. Just base specifics off of her symptoms. At Lurie’s the doctors and nurses battled for weeks to get Aubrey’s lactic acid levels, electrolytes, and blood glucose levels under control. Tyler and Tim knew their time with Aubrey was limited, but never imagined it would be cut so short. Aubrey was finally at an extremely stable point via medication and 24/7 continuous feeds through her NG tube that she was discharged from Lurie’s on August 26, 2023.

Aubrey spent her 3-month birthday (August 27th) at home with her family. That night Aubrey started vomiting and the decision was made between Tyler, Tim, and Aubrey’s doctors to bring Aubrey back to Lurie’s as her doctors were concerned she was having a metabolic episode. Upon being admitted to Lurie’s again, it was discovered that Aubrey’s lactic acid levels and electrolytes were completely out of control. This time, no medication or intervention was able to bring Aubrey back from the metabolic crisis she was in, and she passed on August 30, 2023 in her parents arms.

Aubrey spent more of her life in a hospital than she did at home. She never got the chance to meet a good chunk of her family. Tim was able to work during Aubrey’s first stay at Lurie’s, but did not work the entire time Aubrey was at Evanston or their 2nd stay at Lurie’s. There have been less paychecks coming into the home, and growing medical bills between the 4 hospitals Aubrey had to stay in plus 2 medical transports. I’m hoping to help Tyler and Tim not worry about bills and money while they mourn the loss of their baby girl. They plan to hold a Memorial/Celebration of Life for Aubrey in the near future, but details are not available as of yet.

If you’re unable to donate, please share their story.