As instructed to Jaimie Seaton
When our son Aidan was in pre-Ok, the lecturers needed to place him in a gifted college. But I felt like he was nonetheless a child, and I needed him to have a traditional childhood and never be overwhelmed with schoolwork, so my husband and I opted to maintain him in the identical college, the place he performed soccer and chess. Even at that younger age, he was a very good chess participant.
We had no purpose to imagine that something was improper with him or that something was happening in his physique till the latter a part of first grade, in late March, when Aidan began having imaginative and prescient issues. He couldn’t see peripherally. He would stumble upon issues and he began writing on an angle, neither of which appeared an enormous deal at the moment. We simply thought he wanted glasses and that it could be a straightforward repair.
Aidan in 2006
We went to an ophthalmologist and a pediatric ophthalmologist, and so they each stated he had 20/20 imaginative and prescient. So, then we went to a retina specialist, our pediatrician, and eventually to a neurologist who did a bodily checkup. He didn’t suppose something was improper however advisable an MRI to be thorough.
When we obtained the outcomes of the MRI again in June, it was the primary time we’d heard about this situation known as adrenoleukodystrophy (ALD), which destroys the myelin within the mind and impacts males most severely. ALD impacts all features of neurological functioning and with Aidan it affected his imaginative and prescient first. An individual’s skill to listen to, see, stroll, speak and eat — all of that's finally taken away till you’re in a vegetative state and in the end, die.
There was already a number of injury carried out by the point Aidan was identified, and we knew we needed to do every part we might to save lots of his life.
We had a visit to Disney World already deliberate after we obtained the prognosis, and we determined it was essential for our household to go. Aidan beloved all of the rides and was fearless. He didn’t know what was happening, and we tried to make the most effective of it. I’m grateful that we made that journey as a result of it was the very last thing we did as a household earlier than Aidan went into the hospital.
It was overwhelming to have our lives turned the other way up from one second to the following. Everything was high-quality — after which we acquired this life-altering prognosis. When that occurs, you do not actually have a number of time to suppose. We had been on this mode to save lots of Aidan’s life, and our choices needed to be made in a short time.
There are just a few hospitals within the nation which have experience on this situation, considered one of which is in Minnesota, so we had been on a airplane to Minnesota the next week. At that point, in 2011, the one therapy for ALD was a bone marrow transplant, and Aidan was eligible. This was our solely possibility, so we opted for it and moved our household right down to North Carolina so he might get therapy at Duke.
That was very troublesome as a result of we had been residing in a metropolis the place we didn’t know anybody, although I’m grateful that Aidan’s grandparents got here down and stayed with us and helped with our daughter, Sienna, who was 5 on the time.
We simply lived day-to-day, taking turns residing within the hospital as a result of we by no means left Aidan alone. It was turmoil, praying for a very good final result however getting hit with an increasing number of dangerous information.
Aidan acquired his bone marrow transplant on his seventh birthday. But as a result of he had a late-stage prognosis, he misplaced all of his skills and he spent seven months within the hospital earlier than being transferred to NYU, the place he spent an extra three months.
On April 29, 2012, Aidan died on the age of seven ½.
Aidan in 2010
While I used to be residing within the hospital, I did analysis on something that would change the course of Aidan’s situation, and I bear in mind mendacity within the mattress with him and studying that there was a new child screening take a look at for ALD — however not one state was placing it to make use of. I knew that it could have meant the distinction between life and demise for Aidan in addition to 1000's of different boys on the market. Though this situation is uncommon, it’s not that uncommon: It strikes 1 in 15,000. So why wasn’t the take a look at a part of the routine new child screening carried out in each state?
I known as the new child screening lab in Albany as I lay in mattress subsequent to Aidan. I obtained one of many administrators on the telephone and was instructed that they needed ALD to be examined for, however, as a authorities company, their palms had been tied.
I simply knew at that second that I needed to do every part I might to forestall this from occurring to different boys and different households. By the tip of 2012, I had began a basis in Aidan’s honor and launched into a mission to have each child in New York screened for ALD.
Finally, after about 6 months of preventing, Aidan’s Law was signed in New York, on March 29, 2013 — precisely 11 months to the day of dropping Aidan — making it the primary state within the nation to check all infants born for ALD. Since that point, our basis, ALD Alliance, has labored in lots of different states so as to add ALD testing. Today we're testing for ALD in 29 states and dealing towards federal laws to make sure each child born all through the nation is examined for all new child screening circumstances which have remedies.
I really feel grateful to Aidan as a result of I really feel like I’m a automobile, and my love for him retains me going. I promised him that I'd make this occur earlier than I died.
I’ve had the privilege of assembly the household of a boy who was identified in New York, due to new child screening carried out due to Aidan’s Law. I used to be so grateful to fulfill them and to know that his life can be completely different due to my son. Today, I’ve met many households as we proceed our work and maintain annual ALD Standards of Care Meetings each January. I’m grateful and blessed to have these households in my life and to know their lives can be completely different due to new child screening.
I feel Aidan could be happy with me.