I Made a Promise to My Son

As advised to Jaimie Seaton

When our son Aidan was in pre-Ok, the academics wished to place him in a gifted faculty. However I felt like he was nonetheless a child, and I wished him to have a standard childhood and never be overwhelmed with schoolwork, so my husband and I opted to maintain him in the identical faculty, the place he performed soccer and chess. Even at that younger age, he was a superb chess participant.

We had no motive to imagine that something was unsuitable 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 will be a straightforward repair.

Aidan in 2006

We went to an ophthalmologist and a pediatric ophthalmologist, they usually each mentioned 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 assume something was unsuitable however really helpful an MRI to be thorough.

After we obtained the outcomes of the MRI again in June, it was the primary time we’d heard about this situation referred to as adrenoleukodystrophy (ALD), which destroys the myelin within the mind and impacts males most severely. ALD impacts all facets of neurological functioning and with Aidan it affected his imaginative and prescient first. An individual’s capacity to listen to, see, stroll, speak and eat — all of that’s ultimately taken away till you’re in a vegetative state and in the end, die.

There was already numerous injury completed by the point Aidan was recognized, and we knew we needed to do every part we may 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 cherished all of the rides and was fearless. He didn’t know what was happening, and we tried to make the very best 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. Every part was tremendous — after which we obtained this life-altering prognosis. When that occurs, you do not actually have numerous time to assume. 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, one in all which is in Minnesota, so we had been on a aircraft to Minnesota the next week. At the moment, in 2011, the one remedy 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 may get remedy at Duke.

That was very tough as a result of we had been dwelling 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 dwelling within the hospital as a result of we by no means left Aidan alone. It was turmoil, praying for a superb end result however getting hit with increasingly more unhealthy information.

Aidan obtained his bone marrow transplant on his seventh birthday. However 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

Whereas I used to be dwelling within the hospital, I did analysis on something that might 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 will have meant the distinction between life and loss of life for Aidan in addition to hundreds of different boys on the market. Although 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 completed in each state?

I referred to as the new child screening lab in Albany as I lay in mattress subsequent to Aidan. I obtained one of many administrators on the cellphone and was advised that they wished ALD to be examined for, however, as a authorities company, their fingers had been tied.

I simply knew at that second that I wished to do every part I may to forestall this from taking place 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.

Lastly, after about 6 months of preventing, Aidan’s Legislation was signed in New York, on March 29, 2013 — precisely 11 months to the day of shedding 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. As we speak 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 might make this occur earlier than I died.

I’ve had the privilege of assembly the household of a boy who was recognized in New York, because of new child screening completed due to Aidan’s Legislation. I used to be so grateful to satisfy them and to know that his life will likely be totally different due to my son. As we speak, I’ve met many households as we proceed our work and maintain annual ALD Requirements of Care Conferences each January. I’m grateful and blessed to have these households in my life and to know their lives will likely be totally different due to new child screening.

I believe Aidan can be happy with me.