a precariously perched pile

In case you missed this on Today’s Parenting Team:


It stares at me every time I walk into the office, with a look of defiance that often makes me turn around and walk away. But when I walk away, I feel even worse. I know it will grow even bigger by the time I return. The days I feel brave enough to confront it, I’m usually struck that it isn’t quite as fierce as I had imagined. After all, it’s only paper.

I’m not sure why I allow paperwork to be my nemesis. I spend hours a day at my desk, where I often waste plenty of time writing unnecessary emails and looking through social media, trying not to let my eyes rest on the giant pile to my left. It’s bills and school notices and various “to dos” – nothing wicked. Why do I avoid it until it’s two feet high?

A precariously perched pile of pieces of uninspiring nonsense that wakes me up in the night with worry, Did I pay that bill? When are the medical forms due? Have we gotten next year’s school schedule yet? Where did I put those tickets to the show this weekend?

The only thing I can come up with is that on some level, I must NEED to have those worries keeping me up at night. I must NEED a miscellaneous assortment of silly worries to keep my brain from lingering over bigger things. Lord knows I have some bigger things that would keep me awake. Worries that I can’t simply erase with an hour or two of tackling paperwork.

When you have a child with special needs, you have a multitude more to worry about than other parents – you just do. You have all the regular parenting concerns – How is my child doing in school? Are they getting all the proper nutrition? Have they been to the dentist this year? BUT, on top of that you have the special worries – How quickly will they end up in the hospital if they get that flu that’s going around? Does that restaurant have a bathroom big enough to change my child if they soil their pants? Who would care for my child if I get sick? What will happen to them when I am gone?

It’s not to say that special parents spend every waking moment being bombarded with lingering questions. Most of us manage to get through most days without falling into the well of despair. We learn to compartmentalize our thoughts and structure our days so that they are manageable. We learn to prioritize our daily list so that we don’t get over-tired. We know that we need to stay strong. After all, we are our children’s greatest hope for having the best lives they can. If we fall apart, who would fill our shoes?

So, we stay strong and focused and, when all else fails, we do things to trick ourselves into focusing on the mundane. It’s way easier to worry about whether or not I ordered my child’s new medication or paid the electric bill, then what will happen if he has another massive seizure.

So, the next time I walk into the office, I’m not going to turn away. Instead, I’m going to sit right down with my pile of papers and thank it for being there. Then, I am going to check my Facebook feed.

Love, Jess
I am a normal mom with a “special” kid. My family is complicated AND wonderful.


a ski weekend, the Jack Pack, and next year


Just getting back from a ski weekend in Vermont with friends. Over the years we’ve done a lot of these weekends. We rent a house with a few families. Most everyone skis, but there are always a couple of people who linger with me and Jack. Our days are filled with quieter activities, but we always manage to have fun.

Each morning the house scrambles to life as the kids all frantically run around searching for their gear while the parents try to get some breakfast into everyone and make the lunches for the mountain. Depending on how late the previous night’s festivities went, the skiing crew heads out the door between 9:00 am and 10:00 am — then the house falls silent. That’s when the non-skiing crew makes a plan.

This trip included an awesome hike, a three hour/10,000 calorie lunch, an adventure to visit my oldest friend and her daughter AND a whole lot of girl talk – the rest of non-skiiers were ladies (sorry Jack). Jack is accustom to hanging with the ladies, and knows more than his share about the local gossip and just how many Weight Watchers points are in a margarita, but he always knows that by the end of the day he will be reunited with his peers. They will all walk in the door and, without missing a beat, find JackO to greet him and fill him with stories from their day’s escapades. Anna is always the leader of the Jack Pack – the best sister on the planet.


But what about next year?

THAT’S the question that seems to fill my mind constantly these days. We just had an amazing weekend in a beautiful log cabin in Vermont — enjoying friends and the landscape and late nights singing along with music from our high school years (sorry I am not allowed to post any activities that took place after 9:00 pm). A perfect weekend and my biggest take-away is — What about next year?!?

Anna will be starting her second semester of college by February next year. Will Dan, Jack and I still head up to a mountain for a long winter weekend? What will it be like to travel with Jack as the only Torrey kid? Is it worth trying to continue these annual traditions or is it better to start new ones?

I know what you’re thinking — Anna isn’t moving away permanently. She’s going to college. College kids are home as much as they are gone AND she is only going to be 180.6 miles away. There will be many more family trips.

BUT, it is going to be different once she heads off to Baltimore. Her priorities will be — should be — on her life, on her future. It will be the beginning of her life as an adult and the beginning of our nest changing – again. The house is going to be so quiet when she isn’t around. Who is going to remind us what Jack should be wearing and listening too? Who is going to protect Jack from the endless hours in front of Bravo (with me) and PBS (with Dan)?

We will figure it out. Anna will only be a phone call away with her fashion advice and Dan and I will learn to control our TV habits (we know how to find TruTV). And, as far as the ski trip goes — we can go earlier in the winter if a ski trip is a “must do” Torrey activity. We can also forgo skiing altogether and go down to Baltimore and eat some crabs with Anna.

THIS is the real issue. THIS seems to be my go-to solution to all “my nest is changing” worries. Sorry Anna.

Love, Mom



THIS is ALD #12 — Carter

A year ago, on February 6, 2017, one boy lost his battle with ALD. Carter’s mom, Stacie, is amazing and shares his story with honesty and love.


THIS is ALD #12 — Carter


December 31, 2010 my youngest son was born. Carter Joseph, weighing in at 8 lb 1 oz and was 21 inches long, a healthy baby boy. Carter completed our family, he made us a party of four, and we couldn’t have been happier.

He met all his milestones, was thriving, just overall a very happy baby. Then the toddler years came, he was into everything, such a daredevil who was absolutely fearless. His personality was unlike any toddler his age, a typical boy with gorgeous blonde hair, big blue eyes that would cheer you up on your worst of days. That part of Carter never changed, but at age 4.5 things started to be different.

After many appointments with many doctors, Carter was diagnosed with ALD, “a too late” diagnosis left us with no options to save our baby, and for 14 months he battled this relentless disease. Month by month after diagnosis, Carter lost his abilities… sight, sound, speech, swallowing, walking, until he became 100% dependent on us, within 6 short months. ALD robbed Carter of everything.

It took a toll on all of us as we watched the boy who was scared of nothing, losing his biggest fight. Quickly after Carter’s diagnosis my whole family was tested, as ALD is a genetic disease… Carter was the only male affected, myself and my mother are the only women in the family and we are both carriers… while her VLCFA numbers were way higher than mine, it didn’t matter as I still passed it to Carter. My oldest son, Peyton (age 10) was not affected, and he very easily could have, as it’s a 50/50 chance each pregnancy. Scary odds, even scarier if you didn’t even know about ALD, yet were a carrier of such a deadly disease.

Knowledge is power, Newborn Screening is necessary — I’d give anything to know what I know now, and maybe, just maybe, I wouldn’t have had to watch my baby take his last breath at just 6 years old, and somehow continue living this life without him.

— Stacie (Carter’s mom)


Unfortunately, Carter’s story is not uncommon for childhood/cerebral ALD. If you don’t know that the mutation is lurking, and are not looking for it, ALD is often diagnosed too late for any treatment. Families are faced with helplessly watching their child’s abilities be taken one by one, before they are completely robbed of everything.

Newborn screening would have given Carter’s family knowledge and power and hope.

Thank you Stacie for sharing Carter’s story with us.


Love, Jess

THIS is ALD #10 – The Waterman Boys

I am heading to Brooklyn for a conference tomorrow  — ALD: Identifying Standards of Care. Looking through the agenda, I couldn’t help but get excited about once again meeting some of my heroes. Doctors, researchers, and parents who are actively making a difference in the future of ALD. For me, it’s like going to the Oscars, minus the gowns and red carpet.

Pouring through the list of speakers, I noticed a name that looked familiar. Then, I looked again at my computer. On my screen, right beside the agenda, was my next THIS is ALD story — The Waterman Boys.

Kelly Waterman is speaking tomorrow and she had just shared her family’s story with me. It’s an incredible story full of luck and love and the power of change.



THIS is ALD #10 — The Waterman Boys


My husband and I live in New Jersey but we both have both worked at an oncology hospital in Manhattan for many years.  I have done most of my own doctoring in New York City and I suppose for something as big as having a baby I just felt more comfortable having my children in NY.  

We were so excited when we got pregnant with our second son and that my pregnancy went so smoothly.  Our first son Jalen had been born two months prematurely four years ago and though he’s turned out wonderfully-the experience of having a preemie and the NICU was hard to forget.  Kylar was born ten months ago full term via c-section, was a beautiful baby boy and did so well we even went home one day early!

We had been home a week, had just settled in when we received a phone call from the pediatrician at 430pm on that Friday afternoon telling us that Kylar’s newborn screen had come back for something called ALD and that we needed to go get confirmation testing done to just make sure.  Our pediatrician wasn’t too sure even about the details of what we were discussing.  I quickly called genetics at Columbia and got us in for that coming Monday morning.

During that brutal weekend that felt like an eternity of googling and many many tears, I had been talking with my cousin who was a pediatrician herself in Massachusetts about what we had been told.  She then ended up discussing our situation with one of her nurse co-workers that Saturday who happened to have previously worked in clinic with Dr. Florian Eichler- an expert in the field for ALD.  She offered to put me in contact with him.  It ended up being such an amazing coincidence.

Dr. Eichler so generously spoke to me (remember this was a Saturday and I was a stranger who was half talking half crying the whole conversation) and discussed that we would need confirmation testing but that the test was good so to brace myself that my son did in fact have ALD.  He also discussed that if confirmed my then four-year-old son would need to be tested as well.

That Monday I decided that I was going to bring my four-year-old with us to that genetics appointment.  I knew that I was never going to survive waiting weeks to find out if not only the baby had this but him as well.  Thankfully they agreed to draw my older son’s blood also.

One week later it was confirmed that both Kylar and Jalen had ALD.  We were devastated.  I was already so upset that our sweet new baby likely had this but that not only had Jalen survived the preemie experience but now this.  I was grateful for the fact that I already had Dr. Eichler as a contact and we rushed Jalen to Boston where thankfully his MRI of his brain was normal.  

We also found out that Jalen my older son has Addison’s (the adrenal insufficiency that commonly occurs with ALD) and requires daily steroids as well as stress dosing and at four months that our sweet baby Kylar also already has impaired adrenal function however not to the extent of his brother yet.  

So as crazy as all this has been finding out when you have a brand new baby that both your children have a rare life threatening disease-it’s not been lost on us just how lucky we are that all the pieces to this puzzle have lined up just right to save our boys.  If we hadn’t had a second child or in NY we never would have known about either boy and certainly would have been much worse off.  ALD being on newborn screen in NY state wasn’t initiated until one year after Jalen was born so he had just missed or if they were born in our own state we reside in of NJ we wouldn’t have known either.  We also are so lucky that Jalen never went into an adrenal crisis as that can be life threatening as well.  

We try our best to live our lives full of love for our boys and ensure their happiness.  As a mom it’s hard not to always worry but we try to keep our focus on the positives and how if this had to happen just how lucky we are.

— Kelly


Hope and knowledge should not be provided on a state by state basis. I’m thrilled for the Waterman family that they delivered their children in NY and have the knowledge they need to provide the best opportunities for their boys, BUT what about the boys born in another state?

If the Waterman boys had been born in NJ (which is not yet testing for ALD – hopefully by the end of 2018), the first time the Watermans would have heard the word Adrenoleukodystrophy would have been in the middle of a crisis – perhaps too late to do anything to help their beautiful boys.

More proof that Newborn Screening for ALD needs to happen everywhere! Wonder where the US is in the process of adding ALD to Newborn Screening?


Thank you Kelly for sharing your family’s story and I look forward to meeting you tomorrow!!

Love, Jess




Anyone else exhausted? I keep looking at the calendar to see what day it is and almost hoping that this holiDAZE season is over. Between the cookies and the wine, I’m in much need of some New Years resolutions and looking forward to getting started.

Shame on me. Three more days and I need to enjoy every minute of it!

Our holiday got off to a rocky start. My in-laws arrived for our Torrey Christmas celebration on the 22nd, and by early morning on the 23rd both Jack and I were vomiting. After cleaning up a stinky mess (thank you PopPop and Sue) they escaped from  our house to meet the family elsewhere – no need to spread the germs around. We sent them out the door with the food we had been preparing for days. If I hadn’t felt so terrible I would have felt REALLY terrible. Luckily we managed to avoid the hospital (the stomach flu often requires an ER visit for JAckO) and by the next day we were on the mend.

We’ve been celebrating every since!

Lots of festivities with family and friends and lots of time being lazy around the fireplace. Except for the tummy issues, it’s been great AND IT’S NOT OVER. New Years Eve is tomorrow before reality finally sets in.


Enter a caption

2018 is a big year for our family with Anna heading off to school in the fall. Johns Hopkins University is lucky to have her and we are thrilled that she is headed to a school that feels like home to us. Dan may have received a JHU diploma, but I spent a good part of my college years in Charles Village pretending to be a Blue Jay. As hard as it will be to drop our girl off in August, at least it feels familiar. AND we all know that we will be finding any excuse to drive down for a visit;) Sorry Banana . . .

The adjustment will be difficult, but we will find a new rhythm. The house will be quieter, but we will figure it out. That’s what we do. We figure things out.

Until then, I’m going to work on keeping my New Years resolutions and enjoy our time together.

Here’s my list:
1.     Not just to pay for Weight Watchers, but to FOLLOW Weight Watchers (the stomach flu did help me drop a few pounds, but it’s not a great diet plan)
2.     Limit my vino intake – I’m too old for hangovers
3.     Encourage Jack to use his iPad. We need to get him talking before Anna leaves
4.     Up my yoga to two days a week . . . maybe three                                                             5.     Continue sharing THIS is ALD – please contact me if you are willing to share your story jctorrey@mac.com                                                                                                                                  6.     Start my next book                                                                                                                         7.     Move to Baltimore;)

Wishing everyone a Happy New Year!!!! 2018 is going to be amazing!!!

Love, Jess


Two-Armed Sister Clutch


You’ve heard from me for ten years. Now, it’s Anna’s turn. When it came time for her to write her college essay I was excited to help, but like all things academic, she insisted on doing it on her own.

Two-Armed Sister Clutch

        I have to hold his torso carefully so that he can’t bite me. For years, as my brother has gotten stronger, my technique has evolved from a simple shoulder hold into the now perfect “Two-Armed Sister Clutch.” My dad takes care of his head to keep it propped up—after all, the neck is the most important part. After ten minutes of very cautiously carving away at his beard, the world’s brightest smile emerges from his newly exposed face. I’ve just shaved my nineteen-year-old brother for the third time this week; my favorite chore with my favorite person.
        A sharp automatic razor and Jack—that’s my brother—make for a very interesting endeavor. But despite the chaos of the project, it always gets me thinking clearly. I think about the disease that forced its way into Jack’s brain ten years ago and made him this dependent on me, and about the fact it has been TEN years. I think about who he was before his disease—my typical big brother, goofy and in love with life. I think about who he is now—my silent and disabled big brother, goofy and in love with life. And finally, I think about who I am, and who his disease has made ME.
        Shaving my brother is a difficult task. I start off by trimming the top layer of the every-so-gnarly hairs. The first layer of Jack’s story is one very long word (the first word with more than six letters that I ever learned): Adrenoleukodystrophy (ALD). That is the neurodegenerative disease that turned my family from one straight out of a J. Crew catalog to the very quirky, “special” family that we are today. I was six, Jack eight, when he was diagnosed with ALD and his brain function slowly unraveled. Suddenly, my brother’s voice wasn’t around to fill up my house with jokes and curiosity. Suddenly, I had to be the athlete of the family…and the social butterfly… and the nerd. And now, a decade later, I am a hop skip and a jump away from being a professional groomer, too.
        After I trim Jack’s beard, its time to crank the razor up and dig down through all the brush, rounding the jawline and inching in to each crevice. Shedding that hair makes Jack look so presentable,… so professional… so normal. I get flashes of Jack Torrey as an adult (Doctor? Lawyer? Artist?), walking the streets of a big city, wife and kids by his side, living a normal life. I see myself meeting him for a bagel and talking about our careers, our friends, or our families. Sometimes I just picture us talking. It has been ten years since Jack last spoke.
        Luckily, my feeling sorry for myself is quickly interrupted by the most amazing laugh to ever exist. The disease that stole Jack’s words and independence did not manage to steal his laughter. I look at him and see what that sweat-inducing work out really uncovered: a giant, radiating smile. I let go of him and he wanders around the kitchen, slowly making his way back to me, tongue out and eyebrows raised, to give the best hug any sister has ever gotten from their big brother. That is Jack’s way of saying thank you.
        I’ll never have a typical sibling to show me the ropes of life and gossip with when I’m older, but Ill always have Jack. I’ll have his smile to tell me to always work as hard as I can. I’ll always have his laugh to encourage me to give back to other people and other families. I’ll always have his hugs after a lacrosse game or job interview gone wrong. And, I’ll always have an escape when I want to think about these things all over again—after all, that boy could always use a shave.

Anna Cappello Torrey
Johns Hopkins University Class of 2022 (we just got the news!!)


Love, Proud Mom




THIS is ALD #3 – Dalton

The response to THIS is ALD has been remarkable (If you missed post, check it out). I’ve spent much of the last week corresponding with people in the ALD community — hearing stories and sharing our own. It’s been emotional, but it does have me thinking that I’m onto something good.

I was working on a post about Goucher College and The Grateful Dead (including some marriage advice), but that’s going to have to wait. I have another ALD story about an amazing boy named Dalton.

THIS is ALD #3 — Dalton

I met Dalton’s mom, Jennifer Lindsey, in person this fall at an ALD symposium. I’d followed their ALD story since the beginning, and I was glad that I got to turn her from a stranger-friend to a friend. She is smart and loving and dedicated to the ALD community. As soon as I reached out to the ALD world asking for volunteers for THIS is ALD, she sent me a note. She agrees that the more people share, the brighter the ALD landscape will be.

Thank you Jennifer for your words.

        Dalton was a very laid back, easy going kid.  On a normal day, he wanted to wear jeans and a t-shirt.  In fact, if I ever had a polo or button-up shirt set out for him he automatically assumed it was picture day.  He kept his hair short, but did have a Mohawk a couple times, which he thought was awesome.  Dalton was a hot mess, but he was my mess.  One moment he could be the sweetest, most loving kid you ever met and then turn right around and be the most devilish, ornery kid ever. 
        I always thought Dalton was destined to be a comedian.  He could always make you laugh, even if you didn’t want to.  Sometimes it was genuinely funny and other times it was just so downright stupid it was funny.  Even when he wasn’t trying to be funny at all, it just came naturally to him.  At times he didn’t know when to stop.  He just liked making people laugh so much that if it worked he would keep it up, which at times was just fine and other times could be so frustrating.  Like most kids, he didn’t have a filter, so there was no telling what was going to come out of his mouth.  Dalton was a very sweet, loving boy who was robbed of everything possible by this monster we call Adrenoleukodystrophy. 
        Dalton was diagnosed on July 13, 2016 with Adrenoleukodystrophy, a genetic metabolic disorder that attacks the myelin sheath of the neurons in the brain. It literally robs these boys of their vision, hearing, motor skills, mobility, speech, ability to swallow, and eventually leads to death. A bone marrow transplant can stop the progression of the disease if successful, but does not reverse the damage already done.
        He was a perfectly normal 10 year old boy before. We had no clue. The only reason we had an MRI was because he was having hearing issues in May, 2016. I was thinking it might either be a brain tumor or a processing disorder so we did the MRI to be on the safe side. Second worst day of our lives. At that point they sent us to Riley in Indy, who more or less gave us a death sentence. We were then several days later pointed in the direction of the University of Minnesota Masonic Children’s Hospital, where we spent almost 5 months.
     Dalton had his stem cell transplant on August 29, 2016 which went beautifully, but he contracted the Epstein Barr virus in October, had to undergo more chemotherapy, and then was diagnosed with acute grade 4 gut graft vs host disease around mid-November. They tried several treatments, which were unsuccessful, and he was sent home on his birthday, December 1. We were under home hospice care until December 13 when he passed. I believe with all of my heart that newborn screening and gene therapy would have saved Dalton’s life. 


Watching Jennifer’s Facebook feed over the last few weeks has been difficult. She has been reliving/reflecting/sharing (not sure of the right word, but it’s been both heartbreaking and beautiful). “See your memories” is a feature on Facebook that should be about fun memories of silly times over the years, but when you’ve lost someone, it can be upsetting. Jennifer’s Facebook page has been sharing the last few weeks of her son’s life as well as who he was before ALD crept into their lives. Dalton’s radiant smile before ALD is beautiful, and that is the boy that I chose to picture here. I love how Jennifer describes him, “One moment he could be the sweetest, most loving kid you ever met and then turn right around and be the most devilish, ornery kid ever.” Sounds like an awesome boy!

Unfortunately, Dalton’s story is not uncommon for ALD. Stem cell transplants have profound risks and if the disease has escalated passed a certain point, many boys lose skills quickly during the process. And, like in Dalton’s case, a transplant can leave a person vulnerable to infection, rejection of the new cells and Graft vs Host Disease (where the new cells – the graft, attack the body – the host).

As Jennifer says, Dalton’s story might have been different if they had had the luxury of newborn screening for ALD and had had access to gene therapy. Newborn screening allows families to prepare and monitor their child’s health so that treatment is provided in a timely fashion. Gene therapy does have risks, but Graft vs Host disease and rejection is avoided. It’s a game changer for ALD.

For more about Dalton and his journey, check out: In the Blink of an Eye: Dalton’s ALD Journey

Thank you Jennifer for sharing Dalton’s ALD journey.

Love, Jess

Please contact me at jctorrey@mac.com if you are interested in sharing your ALD story for THIS is ALD.

THIS is ALD #2 — Sean


The odds of winning the Powerball lottery are one in 175 million. The odds of being born with the Adrenoleukodystrophy gene are one in 17 thousand.

And yet, everyone has heard of the Powerball, while most people give me a funny look when I share Jack’s diagnosis.

My go-to response is, “It’s that disease from the movie Lorenzio’s Oil.”

When that doesn’t work, I say something like, “It’s a genetic disease that effects the adrenal gland and destroys the myelin in the brain. It’s worse when it starts advancing as a child. That’s what happened to Jack. Yes – he was totally fine until he was eight-years-old and then . . . well, he kinda fell apart. He did have a stem cell transplant and it stopped the disease from progressing, but he lost a lot during that time. He can’t speak anymore and needs help with just about everything – eating, bathing, getting dressed, even walking down the street. He can eat. He does need to be fed and he has a tube in his belly for hydration. Oh, and he also needs a whole lot of medicine to keep him going. Steroids for his Addison’s Disease – did I mention that his adrenal glad doesn’t work? THAT is pretty common with people with ALD. Not everyone, but most. Jack also needs medicine for his seizures. That’s another thing a lot of the boys deal with. I’m not sure about the men with AMN. AMN is what older men with the ALD mutation get — if they get anything. Some men seem fine. And, most women are fine, at least until they’re older. Then they seem to have trouble walking and with their bladder and bowels. Yea, I know that’s scary. I sure don’t want to deal with any of that. Good news is that my mom’s doing well and she has the mutation. Oh, but that doesn’t really mean anything. Not with ALD. ALD doesn’t seem to have a memory when it comes down a family line. Anyway, Jack has Adrenoleukodystrophy.”
As my description demonstrates, ALD doesn’t always look the same. As readers of Smiles and Duct Tape, you know Jack and you know Jack’s ALD, but, there are many phenotypes – Childhood Cerebral, Adolescent Cerebral, Adrenomyeloneuropathy (AMN), Adult Cerebral, Addison Disease only, Carrier’s Syndrome and the lucky few who are completely asymptomatic. There are also several treatments (no cures): dietary therapies, transplant, gene therapy, treatment for adrenal insufficiency. I could show you charts and explain all the science surrounding the disease, but instead I’m going to introduce you to ALD through it’s people. It will be a chance to get to know ALD — our not-so-rare disease.
A couple of times a month I’m going to share a story about someone (or a whole family) with our disease. Don’t worry – you’re still stuck with me posting stories about JackO and our not-so-special family. THIS is ALD will be a little extra treat.
THIS is ALD #2
Sean Suppan
(Jack was #1)
One of my ALD stranger-friends (now friend) is Ellen Suppan. She and I met years ago when her son, Sean, was starting the transplant process. I remember getting off the phone with her almost breathless. Even though our family was two years ahead of them in the process, it was hard for me to imagine what they were going through. Their ALD journey seemed so much more complicated.
She shared their story with University of Minnesota Pediatric Blood and Marrow Transplantation Center in 2009. These are her words as Sean was going through transplant:
“In 2003, after a lot of doctor visits, we were told that my other son David
had ALD. He was 7. I had no family history, but it has to start somewhere.
Back then, there was nothing we could do for him. Within 3 months, he was
in a bedridden state, and then went to a vegetative state, and he was like that
for 4 years. David passed away in October 2006. We miss him but were
relieved he was no longer hurting.
Shortly after David’s diagnosis, I found out that we were expecting and later
learned I was carrying a boy. And yes, he carried the gene, but had a 50/50
chance of not developing symptoms. With Sean, we were very proactive. We
have known since he was born that he has ALD. When Sean was only 3, he
came down with a high fever and we did an MRI, and everything was clear.
We did another MRI 4 months later and there was a spot there. We were
shocked. David was 5 when this happened.
My main concern was to get Sean where he needed to be. There are good
hospitals. They have done a couple of transplants, but not as many as the
University of Minnesota. The most transplants for ALD have been done here,
pioneered here and they are still working on it.
The downside of going through the transplant is that the chemo may bring
on more advancement. It’s a no-win situation. If I don’t do anything, I have
seen the course it takes. But, we at least know that he will not get to the stage
that my other son had to endure for four years. We are thinking positive.
I am thankful and grateful that Dr. Orchard came up with this treatment. It is bittersweet for me. Back in 2003, they did not do transplants for symptomatic
kids like David. The progression with David was very cruel for a parent to
watch. We are doing for Sean what we could not do for David.
Don’t expect anything to be normal. It’s a new normal. It’s a new way of
doing things. Be ready. I always keep my gas tank half full, because I don’t
know when I’ll need to go to the hospital. Live in the moment. All the other
things will fit into place.”
What isn’t mentioned in this piece is that while the Suppan family was losing their son, David, in the fall of 2006, their daughter Ashling was diagnosed with AML Leukemia (she has just celebrated 11 years in remission). They were still mourning David as they went through treatment with Ashling and were diligently monitoring Sean. Then, as Ashling was enjoying life after her treatment, it was time for Sean’s transplant. Ellen shared with me that she missed her daughter’s high school graduation because she was in Minnesota with Sean recovering from his transplant. ALD often steals a lot from a family.
Eight years after our first correspondence, I finally had the pleasure of meeting Ellen, her husband David and Sean in person. I tried not to, but I couldn’t help but watch Sean closely and compare him to Jack. Sean has the same engaging bright smile and is eager to be part of the conversation. He is able to speak and to the untrained eye appears very typical. I did see a few hints of ALD, but needed to ask Ellen for specifics.
Ellen shared that following transplant they were most concerned about Sean’s vision, but gradually it seemed to improve. He does have difficulty processing new surroundings and has issues with his depth perception. Other challenges include short term memory problems and some behaviors like making odd noises, chewing on shirt collars (THAT is so Jack) and shrugging his head almost violently. He is able to feed himself, but needs help with other activities of daily living. Sean is currently in the seventh grade and moves between a special needs classroom and a few mainstream classes.

Overall Sean is doing great. The Suppan family is grateful that Sean was able to be monitored closely and received his transplant early. Ellen shared a note she received from his teacher. I think it says it all.


Hi Mrs. Suppan,
I wanted to share with you that Sean is doing terrific. I am so proud of him. Today he came up in front of the class and shared with him things he is thankful for. What an accomplishment for him – we appreciate him everyday and are thankful to know him. Happy Thanksgiving to you and your family.


“ . . . we appriciate him every day and are thankful to know him.” THAT is how I feel about Ellen. I hate ALD and the chaos it’s created in our families, but I am honored and grateful to have Ellen as a friend AND to have met Sean. Stay strong little man and I look forward to meeting you again soon – next time with JackO!!


Love, Jess



hApPy bIrThDaY smiles and duct tape!


HaPpY BiRtHdAy Smiles and Duct Tape!!

When the book was released last year, I had my fingers and toes crossed that it would find its way into the world, but in my wildest dreams, I never imagined that it would find its way into so many of the right hands.

Smiles and Duct Tape is not winning awards or getting nominated for prizes, but this is better – it’s helping people. ALD parents, special needs families, and people looking to better understand special needs and/or our little, not-as-rare-as-you-might-think disease, Adrenoleukodystrophy.

A highlight of this first year was our family being invited to meet the folks at bluebird bio earlier this week. Last month, the New England Journal of Medicine released a study that indicates that gene therapy is a promising option for boys with ALD. bluebird bio is behind that research.

Thanks to Smiles and Duct Tape, and my need to share every detail of our lives, bluebird bio found us and asked us to come up to Cambridge and talk to their team.

I liked bluebird bio from the start because they have the same relationship with capital letters as I do (my oh-so-cool not capitalizing my post titles), but when I did a little research, I really fell in love: “we are committed to our vision of transforming lives and making hope a reality for patients . . . ” AND one of the diseases that they’re determined to beat is ALD.

They are not just leading studies on new treatments, they are working to truly understand what the current treatments look like – that’s where we came in. We are the face of what ALD looks like with the current standard of care—a stem cell transplant— and without the luxury of an early diagnose. They wanted to hear more about our story and had dozens of questions for all of us (Anna answered questions with such confidence and grace AND Jack won a lot of hearts with his smile). They asked all about the transplant and details about what life looks like post-transplant. The goal of bluebird bio is to provide a treatment with fewer risks and a better after-treatment quality of life.

With all the crap going on these days, it’s hard not to lose a little faith in our world, but spending the day at bluebird bio felt like stepping into the future – a better future. Brilliant minds who are determined to make a difference. AND they invited us into their nest with open arms. We spoke, we ate, and we got an incredible tour of their facilities. These folks are warm and friendly and wicked smaaaht.


With increased pressure to add newborn screening for ALD across the US and this promising research on gene therapy, the future looks bright for the next generation of ALD boys. If us Torreys can help even a tiny bit, sign us up!

Tomorrow I am off to the Southeast Wisconsin Festival of Books. Yet another exciting opportunity to share our story. I’ll share stories and pictures next week.

Love, Jess





cringing and shaking, but okay


When I was a junior in college, I took an Old Testament class. It was a small class and most of it consisted of open discussions around a large round table. One week in, I approached the professor and told him I was sorry, but I needed to drop the class; “I just can’t do it. My heart races just thinking about speaking in front of everyone.”

Had you known me at that age, you might find my anxiety surprising. I wasn’t someone who hid in a corner or didn’t like attention. It was the combination of academics and public speaking that made me panic. School hadn’t been easy for me thanks to some learning issues, so when I was at school, I did my best to stay safely in the back of the room. I saved my loud, social self for after class time.

To make a long story short — the professor would not let me drop the class. He bargained with me, promising that he would not make me speak until the last class of the semester. I sat silently for months in a class of maybe a dozen people – until the last day. Of course that made things rather awkward. Everyone had thought there was something wrong with me and couldn’t believe it when I actually opened my mouth that day. I did manage to get my words out, but not without a whole lot of “Ahhhhhhh”s and “Uhmmmmmm”s.

After that class, I promised myself that I would never again speak in public. Then, I decided I wanted to be an art teacher. My first few attempts to model lessons in graduate school were painful, but I got over it and managed to become comfortable . . . in front of a classroom of children.

As an adult I have done a little more public speaking. I spoke at a fundraiser for The PG Chambers School, and to some small school groups with our service dog, Keegan. I even spoke at Listen to Your Mother. Each time I walked away cringing and shaking, wondering when it would get easier.

Since Smiles and Duct Tape was published, I’ve had the opportunity to speak more — at bookstores and schools. And, it’s really ramped up this month. I spoke to a psychology class at Seton Hall University about “exceptional children” and was honored to speak at a CPNJ fundraiser sharing our story and our love for CPNJ Horizon High School. Next week I’m speaking about ALD up in Boston and then heading to Wisconsin for the Southeast Wisconsin Festival of Books. I can’t say I feel completely comfortable as I start a presentation, but I do think I am getting the hang of it.


It’s so strange how life can send you in a direction that you never expected. The girl who got Cs in English, wrote a book. The girl who couldn’t stand up in front of a small group of classmates, now speaks in front of large audiences of ADULTS. It’s not without plenty of nerves and a whole lot of shaking (honestly – it’s unreal how my whole body shakes), but I am doing it. If it helps other families going through similar situations or helps students trying to understand what “special” looks like or helps people understand ALD or if it encourages people to support wonderful organizations like CPNJ – I’ll do it.

It’s my way of taking back some control. It’s my way of proving that our family has reached the other side of hell. It’s my way of not letting ALD win.


Love, Jess