Help support Chase during his transplant journey

Hi, our names are DeAnna Cobb and Lisa Weiss and we are close family friends of the Brown family. We would like to help support Chase and his family during these challenging times by starting this GoFundMe.

Please consider supporting and praying for 12-year-old Chase and his family as he undergoes a bone marrow transplant to beat the rare disease ALD. Your support will give the Brown family a huge feeling of relief and allow them to focus on what is most important right now–helping Chase get better.

The Beginning of Their Journey (2021)

During the spring of 2021, Jeff and Jenica received very unexpected test results after they initially took their son, Chase, to his family dr because of drastic grade changes and tiredness. They sent him for bloodwork to check on some symptoms they wanted to follow up on, but these results turned into more and more lab visits due to alarming results. First, Chase was diagnosed with adrenal insufficiency and sent to a pediatric endocrinologist to routinely follow up on this disease. The following bloodwork showed very long fatty chain acids (VLCFA) were happening that resulted in seeing a pediatric neurologist who gave an ALD (adrenoleukodystrophy) diagnosis. The next step was a brain MRI to determine if it was the most serious version of the disease - Cerebral ALD.

The dreaded answer came that Chase did have the worst case MRI results that officially he had Cerebral ALD, and when this all started everyone had already googled and saw that this diagnosis leads to death potentially within years due to no cure.

The Brown family would be sent to the University of Minnesota within days of their results with both sons (Chase and Colten due to this disease being genetic it meant a 50/50 chance they both could have ALD) This hospital has some of the best doctors in the world who specialize in ALD and they gave hope instead of a feeling of total fatal outcomes. The boys went through 15+ appointments over a few days, and when all of the tests were completed they found out Colten did have ALD (no signs of the cerebral form at that time). The positive news was that the activity in Chase’s brain was self-arrested (we use the word paused), and that if it did become active again there were a few options to try to halt the progression instead of just feeling they would lose their son to this disease. The treatment that Chase’s condition would qualify for would be a bone marrow transplant.

Information on the rare genetic disease -Adrenoleukodystrophy

According to ALD Connect: Adrenoleukodystrophy (ALD) is an X-linked disease that is caused by an underlying genetic mutation in the ABCD1 gene, which affects the body’s ability to create the protein that helps the process of breaking down very long–chain fatty acids (VLCFAs). The saturated VLCFAs build up in the brain, nervous system, and adrenal gland and eventually destroy the myelin sheath that surrounds the nerves. ALD affects approximately 1 in 17,000 people worldwide. https://aldconnect.org/what-is-ald/

This disease can lead to death at a very early age, therefore, constant monitoring is needed.

The Journey of 2021-2023

The Brown boys would need to have routine MRIs to follow up on any progression of the disease (Chase every 3 months and Colten every 6 months). The disease stayed self-arrested during the rest of 2021 and 2022, but during their annual follow-up in March 2023, it showed that Chase was no longer inactive and a bone marrow transplant would be needed. Jeff and Jenica would always pray that their son would be in the slim percentage of Cerebral ALD cases that would stay self-arrested for his lifetime.

March 2023

Chase would be informed that he would now need a bone marrow transplant for his ALD and that a call would come any moment saying a match was found. The call came in within weeks of being told that a transplant was needed and that a perfect match was found. The Browns were back on the road to Minnesota in mid-April to start the journey of a bone marrow transplant to save their son's life.

The Next Chapter

There will be a week of workup appointments to ensure that Chase is healthy for the transplant. Chase will have to move to Minnesota for 4-5 months to cover all aspects of workup, transplant, and recovery. Jenica will stay in Minnesota with Chase while Jeff will rotate between working back home in Indiana and staying at the hospital with Chase and his mom. Colten will head to MN as soon as school and baseball season are finished so he can be back with his mom and brother. The reason that we are creating a GoFundMe is to help raise money for all the unforeseen expenses that they will endure during the transplant journey. Jenica will not be able to work for quite some time because after their time in MN Chase will be homebound for quite some time to be isolated while his immune system builds back up. This loss of income will create a lot of stress for the family. There will be a huge amount of medical expenses after insurance, travel costs, food, and having multiple households to manage financially. We want nothing more but to allow this family to focus on Chase’s transplant and recovery so we would greatly appreciate anything that people can donate to help the Browns. We will continue to post updates on how everything is going for Chase. The transplant is scheduled for May 11th so that will be Chase’s “second birthday” to celebrate.

Thank you,

DeAnna and Lisa