Aidan Jack Seeger
I have a favor to ask of all of you who read this blog. VOTE YES!!
Aidan’s Law will require ALD screening in all fifty states. Many of you won’t need persuading to stop what you are doing and sign this petition, but some of you may pause and wonder if, in a world full of issues, we should be focusing too much attention and money on a rare disease. This post is for YOU. I have five reasons you should consider signing.
As far as rare diseases, ALD is not so rare.
The current guess is that ALD effects 1 in 17,000 people. I say “guess”, because as our country does more testing, we are finding that many people have been mis-diagnosed with other diseases. ALD is a disease that winds it’s way through families and often does a good job at hiding for a generation or two and masking itself with a variety of symptoms/timelines/etc.
Aidan Seeger’s story is all too common with ALD. Without the luxury of an early diagnosis, the disease is allowed to devastate the body, stealing one thing after another as a family struggles to figure out what’s happening. Once a proper diagnosis is made, the options are limited and often prove to be too late for an already worn out body.
When Jack was first diagnosed, we found a half-dozen other families who were going through the processes of stem cell transplant (still the most popular treatment option). Jack is the only one of those boys who is still alive.
3. QUALITY OF LIFE
Jack is fortunate to have been diagnosed with just enough time to receive treatment and with just enough luck and energy to survive. Unfortunately, ALD did managed to steal much of his quality of life. While he is happy and doing well, he is fully dependent. We feed him, hydrate him (through a tube in his belly), medicate him, dress him, toilet him. He needs someone to walk him from the den to the kitchen. And, Jack is doing far better than some of his ALD peers. Most of these boys are in wheel chairs and many have significant hearing and vision loss.
Many people are hesitant to stand behind and pour money towards an unknown disease. It’s important to understand just how expensive it is for our society to raise boys who survive after a late diagnosis.
Jack’s education costs almost $100,000 a year. He requires (and receives) physical therapy, occupational therapy and speech therapy several times a week. He has an aide who’s job it is to work solely with him, because he is not able to maneuver through his day at his special needs school.
Jack is turning 18 in a few months. An eighteenth birthday is usually celebrated with a party and the honor of voting, being able to serve in our military and applying for college. For Jack, his birthday comes with Dan and I applying for guardianship and Jack becoming eligible for both Social Security and Medicaid.
Jack is a very sweet and VERY EXPENSIVE member of our society.
5. IN CASE YOU NEED MORE
It would have been heartbreaking to learn when Jack was just a baby that a gene was lurking in his body that would likely someday need complicated treatment. It would have been difficult to find the proper doctors to monitor his development as he went through childhood. It would have been devastating to get the news that ALD had started it’s war on Jack’s brain and that we needed to drop everything and proceed with treatment.
BUT this would have happened with enough time that right now Jack would be approaching his eighteenth birthday with a healthy body and a future full of opportunities. If only Aidan’s Law had been passed 18 years ago.
There are 402 more signatures needed on this petition. Let’s help get this wrapped up today. Thank you to the Seeger family for devoting their lives to this cause.