Aidan was having some vision problems starting in late March of this year. 1st grade in PS 154 in Brooklyn, he was doing really well in school. The only problem was reading and writing really close to the page. Our 1st ophthalmologist visit resulted in 20/20 vision. Next we took Aidan to a pediatric ophthalmologist, who also said 20/20 vision and explained how sometimes when children are learning to read and write they may have a tendency to read and write close to the page and they have to be reminded not to. Not convinced we pursued a retina specialist, as we realized he was having depth perception issues. This also resulted in no problems. Our pediatrician then recommended a trip to the neurologist to rule out anything else. On the physical review by the neurologist, he felt there was nothing wrong with Aidan, but ordered an MRI to make sure. This was June 1, 2011. We received the results back the same day and the neurologist explained it could be this disease called ALD, because of the white matter found on the MRI. We never heard of this disease, nor did we know what this meant. On some explanation by the neurologist we were devastated, he said we needed a LCFA blood test to confirm and the results of this wouldn’t be back for 10 days.
Adrenoleukodystrophy (ALD,) is a rare, inherited disorder that leads to progressive brain damage, failure of the adrenal glands and eventually death. ALD is a disease in a group of genetic disorders called leukodystrophies. Adrenoleukodystrophy progressively damages the myelin sheath, a complex fatty neural tissue that insulates many nerves of the central and peripheral nervous systems. Without functional myelin, nerves are unable to aid in the conduction of an impulse, which leads to increasing disability.
The only way to stop the progression of the disease is with a bone marrow
We did not want to waste a precious moment so we booked a trip to the University of Minnesota Hospital to receive further testing and see what are chances were for bone marrow transplant if Aidan did have this disease.
June 13- June 18 Aidan goes through a battery of testing and we receive the results that he does have ALD. We wait to hear what results there are for a match with bone marrow. Because of the progression of the disease there is no time to spare, Aidan’s sister Sienna gets tested ( 1 in 4 chance to be a match) the results come back she is not a match. We have to go with an unrelated umbilical cord blood match.
We opt to go with Duke University Hospital in North Carolina as they have more experience with bone marrow transplant and were able to get Aidan in sooner. Aidan went through 9 days of chemotherapy to prepare him for the new donor blood he was to receive. On July 21, 2011 also Aidan’s 7th Birthday, he received his bone marrow transplant.
We get the amazing news he is engrafted with new cells 12 days later and his White Blood Cell count was going up. We also find out Aidan is all donor cells and the bone marrow transplant was a success.
On August 16, 2011 Aidan has a reaction to one of the medications he was taking called Cyclosporine, which resulted in him being unresponsive, not talking, walking or eating.
The Drs. say this is reversible condition called PRES and he has been in and out of talking, getting up, eating. It is now 5 weeks later and we are still waiting for him to return to his original condition……….
Our journey still continues……
Our purpose for this website is to advocate for newborn screening for all kids. If we would have known earlier about this, Aidan could have been monitored before symptoms appeared. We also want to bring awareness to this disease as many times it is diagnosed as ADHD and too much time passes before the correct diagnosis is made allowing the disease to progress to a point where transplant is no longer an option.
We will be attaching the name of a congressman to write and petition to have this mandatory newborn screening.
Bobby and Elisa’s son Aidan has been diagnosed with a rare brain disease called Adrenoleukodystrophy (ALD). Aidan is a beautiful 6 year old boy with huge blue eyes and a smile that is contagious. He is full of personality and laughter.
He is in dire need of a bone marrow donor. To find out if you are the match, please go to www.marrow.org and look for a drive or center near you. You can also request a mail-in kit, which is a painless cheek swab exam. This will put you in the marrow bank to not only help Aidan but potentially anyone else down the road with a similar situation. So please do not hesitate and get on board today.
We believe there is a match out there for Aidan, please find out if it’s you!
Please help us in praying for Aidan and the Seegers.