Aedrik, 8, needs a little more help in his fight against ALD

April 29 update: I started this GoFundMe five months ago after my friend and former journalism colleague Allison Quinn’s 8-year-old son Aedrik was diagnosed with a brutal neurodegenerative disorder, X-linked adrenoleukodystrophy. It’s rare, genetic, and very often fatal. Allison, recently unemployed and coping with progressive multiple sclerosis, needed resources to get Aedrik the best care possible and a shot at survival.

Nearly 500 people donated, allowing Allison to bring Aedrik from Illinois to Minnesota, where one of the best specialists in ALD works, for treatment. He underwent a risky and grueling stem cell transplant, lost his hair and an awful lot of weight, and endured a series of truly horrible side effects.

The good news is that Aedrik has nearly reached the end of the high-risk 100-day post-transplant period with no major complications, and we are hopeful that it will stall the progression of this disease. In the coming weeks, with any luck, Allison and Aedrik should be able to leave the Ronald McDonald House and go home — with plans to return to Minneapolis for frequent follow-up appointments.

We have increased the goal on this GoFundMe because Allison and Aedrik need extra help to get through the next few months. Medical co-pays and travel expenses consumed more than $20,000 of the original donations, and Allison still had to keep up on rent and other bills while tending to Aedrik around the clock. In addition, she’s paying COBRA premiums of $2,000 a month on private health insurance because Medicaid won’t cover out-of-state treatment.

Allison has started looking for a remote position with health benefits (know of anything?) but we are asking for donations to tide her over and pay for health insurance until she lands something. We know it’s a lot to ask in this time of economic uncertainty, and whatever you can spare is truly appreciated. We will keep you all updated on Aedrik’s progress – he really is a remarkable little human – and please keep him in your thoughts.