ALD Families
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So here’s a quick run down of my husband, Jason…
When he was 17, he got really Ill, ( in hindsight, it was an Addison’s crisis. ) That’s when he was diagnosed with AMN. Back then (1980′s) there was no Internet, so I only knew what the doctors at the time told him. Our understanding was that he had AMN — which affects the spinal cord only– not the brain. We believed this to be the case and went on with life– we figured that at some point in the future he may need a wheelchair, but we would deal with that when we had to. Jason and I got married, he went on to earn a masters degree and a PHD in statistics. He taught at the university level for 15 years, receiving tenure at his most recent position. We never dreamed that AMN could ” change paths”. About 5 years ago, Jason began to notice some visual changes. They progressed quite rapidly and he has been totally blind for 2 years now. His cognitive abilities are involved also. Physically, it has been a downhill slide. He used to walk around using forearm crutches, now he is totally disabled and is in a wheelchair all of the time. We have 3 wonderful kids. Stephen 15yrs, Chris 12, and Lindsey, 5 yrs old.
Recently Jason has had so much difficulty with transfers, that getting in and out of the car was taking its toll on me physically. It just wasn’t possible to go anywhere anymore. I began looking at wheelchair vans, as I knew this would be our only chance for any “freedom” from our home— not to mention needing to get to doctor appts.
Elisa, you were an angel that came with help right as it was needed! The van has made getting out of the house so easy and unstressful! We can never say Thank You enough.
—Carla and Jason Owen
When he was 17, he got really Ill, ( in hindsight, it was an Addison’s crisis. ) That’s when he was diagnosed with AMN. Back then (1980′s) there was no Internet, so I only knew what the doctors at the time told him. Our understanding was that he had AMN — which affects the spinal cord only– not the brain. We believed this to be the case and went on with life– we figured that at some point in the future he may need a wheelchair, but we would deal with that when we had to. Jason and I got married, he went on to earn a masters degree and a PHD in statistics. He taught at the university level for 15 years, receiving tenure at his most recent position. We never dreamed that AMN could ” change paths”. About 5 years ago, Jason began to notice some visual changes. They progressed quite rapidly and he has been totally blind for 2 years now. His cognitive abilities are involved also. Physically, it has been a downhill slide. He used to walk around using forearm crutches, now he is totally disabled and is in a wheelchair all of the time. We have 3 wonderful kids. Stephen 15yrs, Chris 12, and Lindsey, 5 yrs old.
Recently Jason has had so much difficulty with transfers, that getting in and out of the car was taking its toll on me physically. It just wasn’t possible to go anywhere anymore. I began looking at wheelchair vans, as I knew this would be our only chance for any “freedom” from our home— not to mention needing to get to doctor appts.
Elisa, you were an angel that came with help right as it was needed! The van has made getting out of the house so easy and unstressful! We can never say Thank You enough.
—Carla and Jason Owen
My son, PJ (10) has been confirmed to have CCALD, Childhood Cerebral Adrenoleukodystrophy. This is the same disease Lorenzo Odone from the 1992 movie “Lorenzo’s Oil” had. If you would like a better understanding of the disease and what we will be going through, I suggest you watch the movie when you have time to cry. I don’t want to depress anyone, but this is what it is. My older son, Kody (12) has been confirmed to have the same high VLCFA, Very Long Chain Fatty Acids. He was also just confirmed to have ALD.
As you know, our expenses will continue to go up with extra doctor visits (gas and food on the go), expenses insurance won’t cover, doing fun things as a family and making memories while we still can, and eventually funeral expenses. Many friends have suggested I start this page to help us. I know that God will take care of all of our needs and that he uses his angels here on earth to do so. He proved that to me over and over again while Kip fought cancer over 12 years and finally healed him when he took him home 2/21/11. I somehow take comfort in knowing PJ will not only go to be with his heavenly father, but his earthly daddy too.
All that know me know how much of a miracle my boys are and I am honored and blessed to be their mom.
Thank you from the bottom of my heart!! Thanks for all of the prayers too, keep them coming. We will continue to need them more than ever. Love and hugs to all… EACH and EVERY day is a precious blessing. I pray God showers you with blessings!
—Janelle Wyrick Syverson
As you know, our expenses will continue to go up with extra doctor visits (gas and food on the go), expenses insurance won’t cover, doing fun things as a family and making memories while we still can, and eventually funeral expenses. Many friends have suggested I start this page to help us. I know that God will take care of all of our needs and that he uses his angels here on earth to do so. He proved that to me over and over again while Kip fought cancer over 12 years and finally healed him when he took him home 2/21/11. I somehow take comfort in knowing PJ will not only go to be with his heavenly father, but his earthly daddy too.
All that know me know how much of a miracle my boys are and I am honored and blessed to be their mom.
Thank you from the bottom of my heart!! Thanks for all of the prayers too, keep them coming. We will continue to need them more than ever. Love and hugs to all… EACH and EVERY day is a precious blessing. I pray God showers you with blessings!
—Janelle Wyrick Syverson
Adrenoleukodystrophy. ALD for short. What I would give to go back and never learn what this monster of a word means. I would give the world to live a day, even an hour without ALD in my life. But I can’t. ALD is a monster that doesn’t leave. Adrenoleukodystrophy enters innocent lives unnoticed, often until it’s too late for treatment and never leaves. There is no cure for ALD. But there is treatment. The only problem with that is many doctors wrongly diagnose patients because each patient’s symptoms can greatly vary, and are easily confused with other health issues.
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I was going to sit here and go through all the facts, symptoms and sadness this disease brings to families worldwide. I decided not to. I’m sure you’ll hear all the nasty things ALD can do. How fast it can change a perfect little boy into severely disabled boy. I’m sure you’ll get the sad stories, the ones that will never leave your heart. You’ll get the ones that bring a tear to your eye and heaviness on your heart. You’ll see the innocent children who once played, ran, heard and saw, who had that stolen from them. You may not sleep well for a few nights after hearing the gruesome details of the nightmare some ALD parents have been living. I don’t have that kind of story. But I am a parent of an ALD baby. Just like the rest of the stories you will hear, my baby has the same monster growing inside of him. The only difference is my baby boy, has a chance to walk, talk, speak, run, jump, see and hear the rest of his life. We don’t have a magic cure; we don’t have access to special treatment. Nothing like that. We were blessed to be screened for this deadly disease when our son was less than 48 hours old. All because we live in New York.
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Although ALD has struck my life by surprise tore it up and spit it out with no concern for my families feelings I am lucky. Not because I’ve learned what ALD is, but because my perfect little boy has a chance to fight this beast. We will have the opportunity to use the tools that are readily available to monitor, treat and take all necessary actions needed to survive our battle with ALD.
Matthew was born January 29th, 2014 in Syracuse New York. He weighed 7lbs 1oz measuring in at 21 inches long. Matthew was healthy and thriving and continues to do so at 6 weeks old. If you look at my dear son you wouldn’t know anything was wrong with him. You wouldn’t know he has been diagnosed with a deadly disease that attacks some of his most important body parts, his spinal cord and his brain. Matthew has Adrenoleukodystrophy. Do you know how terrifying it is to hear that your perfect little boy’s genes have a mutation that attacks his brain and spinal cord? That even though Matthew will learn how to walk and talk likes a “normal” boy that can be taken from him as young as 4 years old? I hope you don’t, but I do. And that’s why I’m writing to you. |
After hearing the devastating news that Matthews Newborn screening test came back positive for ALD Matthews father and I also found out more information that will forever change our lives, this time for the better. Matthew was the 4th child in the United States to test positive for ALD through the Newborn Screening Program. Not because ALD is that rare but because New York was the first state to mandate ALD screening in newborns. And to make it even more shocking, the law took effect just 28 short days before Matthews’s birth. For a disease that is so rare in 28 days New York has already received 4 positive ALD infants. How rare? Only 1 in ever y 17,000 people have ALD. Soon after learning of this, we learned why ALD was added to the New York newborn screening panel. We learned all about this little blonde curly hair, bright blue eyed boy named Aidan Seeger. Unlike Matthew, Aidan didn’t get tested for ALD as a newborn, and didn’t survive his fight against ALD. ALD may have won that battle, but the parents of Aidan fought on in Aidan’s name. So much in his name that “Aidan’s law” is the reason my 6 week old son has a chance to live a normal healthy life. Without the hours, the dedication, the fighting and the will to beat this monster that so carelessly stole their bright eyed little boy, I would still not know that that huge scary word Adrenoleukodystrophy means, but my little Matthew would still have it. Like I said before I would give anything to live a day without ALD constantly haunting my every thought and action, I am grateful that my son had the opportunity to fight his fight with ALD with the time and resources needed. Aidan’s law didn’t get passed because someone felt bad for the Seeger’s, Aidans law got passed because there’s no reason that any child shouldn’t have the chance Matthew has. Because ALD is treatable, if the patient has the key to lock ALD away forever. And that key is time. Matthew has his key to his fight; thankfully he was born in the right state. Sadly, so many more innocent children don’t have this chance. Won’t ever have this chance, without mandatory ALD screening as part of the newborn screening panel.
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You are probably wondering how that could possibly be good news to a parent. Well; in life you have two choices be happy or be sad. Starring into my perfect 7 pound 2 week old babies eyes we decided to take the happy road. Even though we just had the worst news a parent can ever receive, Matthew would have ALD even if we didn’t get the newborn screening. If that was the case, Matthew wouldn’t have a chance. Matthew at 6 weeks old already has a team of specialists working to monitor his health every step of the way so he can take on ALD with the chance at retaining a normal life. Today Matthew is a healthy baby boy meeting all of his milestones, but someday he may not be. He may go backwards physically and mentally. When will that happen? We don’t know, doctors don’t know. All we know is that Matthew has the mutation in his ABCD1 gene. How he will be affected and when is a medical mystery. There is no test to pinpoint how severe Matthews ALD will be. The only way to conquer ALD’s battle is by giving the doctors adequate time to monitor his health and be prepared for treatment. Without the tool of newborn detection patients of ALD don’t have the chance they deserve. They don’t have the chance my little Matthew has.
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Even though we have only know ALD for a month, it already has killed me to see and hear other stories, some including the death of their sons, and some that found out to late and their 7 or 8 year old is fully dependant on others for care all because of where they live. There are countless families out there right now fighting the fight of their baby’s lives and they don’t even realize it because their child was born in the wrong zip code. There are families struggling to care for their sons because they weren’t tested as a newborn and because of that they had little to no time for treatment as ALD is a very fast moving disease. Every day I wake up and I look into my sons eyes and I thank God for ALD newborn screening. When people hear me tell my story they always say “I’m so sorry”, I tell them “don’t be, Matthew would have ALD with or without newborn screening, but because of newborn screening he has a chance and we have a chance as his parents to give him the medical care he needs to take on ALD and come out okay!” As heartbroken I am that a family lost their son because they didn’t have the test for ALD when he was born, I will forever be thankful for the hard work and dedication the Seegers of Brooklyn New York put into mandating Adrenoleukodystrophy testing for all newborns in new York state.
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Matthew may not be the first positive ALD test- but without a single doubt, he will not be the last. And until there is a cure there’s no excuse any human could live with as to why one babies life is worth being able to have the chance my son has and another baby doesn’t, just because of where he was born.
—Lindsay L. Hunter
#MATTHEWSMISSION
—Lindsay L. Hunter
#MATTHEWSMISSION
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