Help Grayson's Fight Against ALD

My name is Leigh Griner, and my seven-year-old grandson, Grayson Cronin, was recently diagnosed with Adrenoleukodystrophy (ALD). This genetic disease primarily affects boys, and if left untreated, it rapidly deteriorates the brain and ultimately leads to a vegetative state. ALD typically claims a diagnosed boy’s life within 10 years of diagnosis. The disease was highlighted in the 1992 film “Lorenzo’s Oil.”

 

Grayson’s brain MRI revealed that he has the most horrible, dreaded form of the disease called cerebral adrenoleukodystrophy. Right now, we are racing against time. If he doesn’t receive the necessary treatment soon, he could lose his vision, hearing, and all motor function over the next six months to several years. Unfortunately, ALD can progress very quickly, and any losses can NOT be reversed.

 

As soon as we learned of Grayson’s diagnosis, we were literally in a race against time to get him to an ALD specialist. Fortunately, Dr. Troy Lund at the University of Minnesota Medical Center was able to see him. We learned that Grayson qualifies for a bone marrow transplant, which can stop the disease progression but not fix any damage. However, Dr. Lund said Grayson should do well with the treatment because the disease has not crossed a certain threshold, and Grayson is still Grayson.

 

The bone marrow transplant is complicated, with many risks and a tremendous hardship on his body. It involves aggressive chemotherapy, including a surgical port, radiation, and a three to four-month stay in Minnesota. The first four to six weeks of the treatment will be as an inpatient, and the remainder of the time will be spent with regular outpatient treatments and evaluations. He will also need to be quarantined for six months.

 

While the bone marrow transplant process is expected to be approved and covered by

insurance, there will be many unknown costs, such as experimental drugs and nutritional

supplements, and also travel and lodging during his treatment and recovery process. We

are also exploring other options within and outside of the US, including gene therapy and

supplemental medications.

 

Grayson is the cutest, sweetest, and smartest little seven-year-old you can ever imagine! He

learned to read when he was three years old and can easily do complicated mathematical

challenges in his head. Grayson has a kind and humble spirit and will

downplay what he can do to allow other kids to have a chance at success. Grayson is a bit reserved and loves to spend time with family. He has conquered the pool this summer—no challenge is too big for him!

 

Donations in any amount are welcome. I also ask for prayer and encouragement for Grayson and my son Jonathan, a single father to Grayson and his brother Nathan. We are thankful that Jonathan can work remotely, but life has been emotionally overwhelming, and his work has suffered. So, I want to do anything to assist with the costs in the upcoming months of treatments and uncertainties.

 

For more information about ALD, please go

to https://www.childrenshospital.org/programs/gene-therapy-program/conditions-we-treat/ald