I Made a Promise to My Son


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As informed 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 traditional 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 very good chess participant.

We had no purpose to imagine that something was mistaken with him or that something was occurring 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 a giant deal at the moment. We simply thought he wanted glasses and that it will be a straightforward repair.

Aidan in 2006Aidan 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 suppose something was mistaken however advisable an MRI to be thorough.

After we acquired 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 elements 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 finally taken away till you’re in a vegetative state and finally, die.

There was already a variety of injury achieved by the point Aidan was recognized, 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 acquired the prognosis, and we determined it was vital for our household to go. Aidan beloved all of the rides and was fearless. He didn’t know what was occurring, 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. The whole lot was tremendous — after which we obtained this life-altering prognosis. When that occurs, you do not actually have a variety of time to suppose. We have been on this mode to save lots of Aidan’s life, and our choices needed to be made in a short time.

There are a couple of hospitals within the nation which have experience on this situation, one in every of which is in Minnesota, so we have been on a airplane 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 choice, so we opted for it and moved our household right down to North Carolina so he might get remedy at Duke.

That was very troublesome as a result of we have 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 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 talents 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 2010Aidan in 2010

Whereas I used to be residing within the hospital, I did analysis on something that would change the course of Aidan’s situation, and I keep in mind mendacity within the mattress with him and studying that there was a new child screening check 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 dying for Aidan in addition to 1000's 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 check a part of the routine newborn screening achieved in each state?

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

I simply knew at that second that I wished to do every part I might to stop this from taking place to different boys and different households. By the top 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 combating, 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. Right now 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 newborn screening situations which have remedies.

I really feel grateful to Aidan as a result of I really feel like I’m a car, 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 recognized in New York, because of new child screening achieved due to Aidan’s Legislation. I used to be so grateful to satisfy them and to know that his life can be totally different due to my son. Right now, 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 can be totally different due to new child screening.

I feel Aidan can be pleased with me.

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