Baby Autumn was born November 2021, to her parents and two sisters. She’s been in the hospital since birth…
When Autumn was born, she was having some issues with spitting up. When she’d spit up, it would come out through her nose, which is obviously not normal. The hospital staff decided to keep her in until they could sort the issue as they did not want her aspirating at home. While at the hospital, they performed her Newborn Screening bloodwork. It was through this bloodwork that they identified Autumn had a very rare severe immune-deficiency disorder called Complete DiGeorge Syndrome. Complete DiGeorge Syndrome is where part of a chromosome is deleted. (Chromosome 22q11.2 deletion syndrome)
With this deletion, she has a nonfunctioning immune system as she was born without a thymus.
The thymus organ creates T-cells, which allow our bodies to fight illnesses which so many of us easily combat. But for her, ANY illness is life-threatening and will not correct itself.
In short, Autumn does not have a functioning immune system.
Several other symptoms come along with this disorder. She has had a few, but overall, Autumn has been strong.
She has only had a slight difficulty with her endocrine system.
After the Newborn Screening bloodwork identified the severe immune-deficiency disorder, she was transferred to Children’s Hospital in Aurora Colorado. She was placed in the bone marrow transplant unit to keep her in the healthiest place possible until intervention. She’s now been there almost six months.
With this said…Autumn will need a thymus transplant, and the only hospital that does this type of procedure (just now FDA approved) is Duke University in North Carolina. Insurance is still working out the details, but this type of transplant tissue will cost upwards of $2.7 million dollars.
So far, this has been a journey with tons of tears, sacrifice and prayer. The way Josh and Ashley have handled these past six months has been nothing short of admirable. They consistently lean on God, and the strength they gain in doing so is so evident. Skye and Noelle have been the best little troopers and have handled the juggling around from house to house with such resilience.
Now for the great news, thank God! Autumn was just approved for the Thymus transplant procedure! Which is the first phase towards getting on the waiting list. The next step is formal approval from insurance to cover this procedure (Ex. After that, the final step is for the medical team at Duke University to go over all of Autumn’s test results and bloodwork findings with a fine-tooth comb and request any additional testing needed.) Then, Autumn, along with Ashley and Josh, are off to Duke University for the procedure.
While insurance covers the actual transplant, there are many more expenses that come alongside…
- House modifications to make it safe for Autumn whenever she comes home. Flooring, carpet, air filtration etc., will all be needed to help keep her safe while her immune system builds.
- Travel expenses for Autumn and her parents to get her to North Carolina for the operation. Autumn will require a medical flight and from what we understand, this is not covered by insurance.
- Lodging for them in North Carolina for four to six weeks.
- Insurance deductible & further medical tests
- Along with so many other expenses along the way.
Through this account, our goal is to make this upcoming time and procedure as financially stress-free as possible. They are already dealing with so much. We hope to be able to take the “financial worries” away. With any support you can give, they are beyond thankful and feel so richly blessed for your prayers, kindness and generosity. They are so thankful for all of the support they have already received in all different forms... from their family, friends and people hearing Autumn's story along the way.
Thank you, from all of us!