tHaNkS Team Torrey!!!

How many people does it take to care for our boy?

A lot.

Day 14 with a broken rib. Although I’m healing, I’m still not able to do much for Jack these days. Showering, changing, toileting, medicating, feeding – none of these things are particularly difficult, but there’s the Jack factor. Jack moves and grabs and hugs – it’s the hugs that scare me most – they’re magical, but I worry they could be dangerous!! 

So, I haven’t been doing much other than watching bad tv, studying for the National Counselors Exam, and counting my blessings that Jack has an amazing team of people who have stepped up to help out.

Dan has taken on the brunt of the responsibilities, but he has a job. Anna is home now for a few days – yahoo (she had offered to come home sooner, but she had a cold – if you’ve ever broken a rib, you will understand that a cold is terrifying). Luckily, Jack also has an arsenal of other mothers, and they’ve been amazing! Maria, Monica, and Lilly have all been keeping Jack entertained, fed and clean. And, we have a new addition – Natalie. We’ve known Nat since she was a tiny thing. She’s one of Anna’s best friends and she’s now a nurse. She offered to bring her skills and hang with our boy as needed. Lucky Jack – lucky us!

So, I continue to sit, watch bad tv, study for the National Counselors Exam, and count my blessings.

Thanks everyone for being me! I look forward to being able to care for our boy again (and enjoy one of Jack’s magical/dangerous hugs), but it sure is nice to know that Jack has a team who is ready, willing and able to help!!!

Love, Jess

where did the tears come from?

Every month I speak to medical students from Rutgers University. It’s a small group of third year students who are in their pediatric rotation. I’m a “patient representative” who is there to share our family’s story and the good and bad of what we’ve experienced with doctors. I look forward to these Zoom sessions and am always impressed with the students and appreciate being able to sneak in as much as I can about ALD — the often missed signs of ALD and the importance of newborn screening.

After we go around doing introductions, I share the video that bluebird bio made about our family. It’s a great way for the students to learn a bit about our journey and “meet the family”. While the video plays, I usually take the opportunity to slip away from my desk to make a cup of tea or check in with Dan and Jack. Last night I sat and watched the video with the students.

I found myself in tears.

I did regain my composure by the time the video was over and got through the next hour and a half managing to hold it together as I shared stories of working with many exceptional doctors and some who were lacking empathy and/or the ability to recognize when they may need more education about our not as rare as you might think disease. I always try to be approachable and relaxed, using humor to make everyone as comfortable as possible as I share stories about witnessing our son unravel, searching for answers, receiving a life-threatening diagnosis, watching as our once typical, healthy son fight for his life, and learning to adapt to a life that none of us ever imagined. I’ve done this enough that I can let the words just flow. I did a fine job, but I couldn’t help feeling distracted.

After the session, I got up and went directly into Jack’s room, knowing that time with the boy would brighten my mood. We sat and watched The Impractical Jokers and laughed until it was time for us to get ready for bed. I did feel much better after spending time with him.  Jack is doing great. He loves his adult program and time with his other mothers AND can comfortably live at home. His health continues to be stable and, except for an occasional tear shed while watching those ASPCA ads, he always has a bright smile on his face. 

Although I felt better, as I tried to fall asleep last night, I kept thinking about my reaction to watching the video. My only explanation for yesterday’s tears is that it’s been a while since I let myself really focus on what we went through 15 years ago. Sure – I share it, but I remove myself as much as I can from the story. I fill in as many of the dark spots with humor and light. It’s how I survive.

If I were my own therapist, I would ask myself how this strategy is working, and I think my answer would be that it’s working pretty well — I don’t want to live in the dark. I want to live in the light. I want to enjoy all the good our family has experienced and not waste time with the what ifs. BUT maybe sometimes I should consider allowing myself some time to be frustrated or mad or sad. I’m not sure how or when, but I will sure try to avoid doing it in front of a screen full of students.

Love, Jess

SOMA

What will be add to our wall?

Lately, every time we travel Dan and I have the “could we live here?” conversation. Is there enough hiking for Dan? Are there enough resources for Jack? How close would we be to an airport? Would we be close enough to Anna? Could I find clients?

It’s not that we do not like SOMA – that’s South Orange/Maplewood for you out of towneres – we LOVE this community. It’s just that we’ve been feeling like, after 25 years (and two kids, three homes and four dogs), we might be ready to start our next chapter. The kids are done with our school district, taxes are high, many of our friends have left, and we no longer need an easy commute to NYC (the crypto world doesn’t require much time in the office and everyone/everywhere needs therapy). We’ve talked about Block Island, the Jersey shore, Massachusetts, Puerto Rico, the Chesapeake and Maine. They all have their benefits, but will anywhere ever be able to compete with SOMA?

This week, we’ve had a reminder of just how special our community is. We were asked to be interviewed by SOMA Living Magazine for their October issue. Each month they choose a local family to highlight and an old friend recommended us. After sitting through the interview and being asked about our journey since we moved from Brooklyn, we found ourselves wondering why/how we could ever leave our beautiful/progressive gem of a town(s). We shared countless stories about our town(s) – the schools that educated our brilliant daughter and supported our son without question, the restaurants that draw people from all over NJ, South Mountain Reservation which allows Dan to disappear when he needs time with trees, and the people – soooo many stories about the people of SOMA. For 25 years, SOMA and it’s people have helped us celebrate wonderful days and held us up during our dark times. These towns are beautiful and progressive and crunchy and accepting.

We know that our future will ultimately lead us to a move, but for now — we are here. I need to get my supervised hours before I can hang my own shingle, Jack has wonderful support thanks to Universal and his other mothers, and we are not yet sure where Anna will land for medical school. We know in a few years we will make a move, but instead of dreaming of our next home, I’m going to start really appreciating what we have here.

Thanks SOMA!!!

Love, Jess

I will be sure to share the article in October!!!

THIS was a holiday!!!!

Last year we went to my parents’ house in Tuxedo Park for Thanksgiving. It was just the six of us humans and three dogs – Keegan was still with us. We had a great day, but it didn’t quite feel like a holiday. This year we filled our house. Torreys, Perrys, Cappellos, Palets – 21 people and 5 dogs!!! 

There was food in the oven, on the stove, on the grill — even in the toaster. We had mattresses everywhere and used a beer pong table as an extra table. We needed our extra fridge for food, so our patio was filled with beer, wine and soda. I kept encouraging people to go take a nice walk in the reservation while I got things ready, but then more people would wander into the kitchen. Dan played music a little too loud and we played dice until later than we should have.

THIS was a holiday!! I hope everyone else experienced some chaos yesterday and is enjoying some delicious leftovers today!!!!

Happy Thanksgiving!!!!

Love, Jess

One more (wo)man down.

When Jack was in the hospital for his transplant 11+ years ago, there wasn’t much consistency to our days. We would wake up every morning with no idea what the day would bring. Waiting for blood counts, blood transfusions, good news and bad news would trade places several times a day. There was only one thing we could count on — at some point during the day, we would see Mymom.

She would ride her fold-up bike to Washington Heights from her Upper East Side apartment, climb off the bike, flash her visitor’s badge at the front desk of the hospital and head for the elevators. By the time she would reach room 505 there would be no hint that she had just ridden her bike up the gritty city streets in the summer heat.         

Mymom is a woman who you will never see with a hair out of place. Whether she’s sporting her Upper East Side style or Santa Fe hippie chick, she pulls it off. She’s a beauty. Always has been, but the word elegant is a better description of who she is. I look a little like her, but I will never hold myself the way she does. She also happens to be brilliant – a Phd holding, Red Cross working, dynamo with boundless energy. My mother doesn’t ever do anything half-way – even those hospital visits 11+ years ago.

I’m not sure I ever really thanked Mymom for her daily visits while Jack was in the hospital, but this week I got a chance to start to repay the favor. Mymom got a shoulder replacement week. You read that right — it’s the month of shoulders in our family — first Dan, then our Aunt Kathy and now Mymom.

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After a couple of years of fighting her shoulder, Mymom finally gave in and scheduled the surgery. Her biggest worries were that she would need to cancel her Christmas Eve party and what clothes she’d be able to wear. My biggest worries were about Mymom slowing down enough to let her body heal and if I could talk her into binge watching Bravo so we could discuss Dirty John (it’s so gooooooood). I also worried about how I could help as much as she helped us all those years ago.

There really wasn’t much I could do, but be there this week. I went back and forth, providing a little distraction and I wasn’t the only person eager to hang with Mymom. Of corse Nonno has been at her side every step of the way and both of my brothers, my beautiful niece and our cousin spent time in her room sharing gossip and telling stories. It ended up being an unexpected family reunion.

As I left the hospital yesterday, Mymom commented that it’s been such fun having the family together. I looked at her in her hospital bed wearing nothing but a hospital gown and a hint of lipstick left from her attempt to “clean up before her visitors arrived”. I thought, wow — the power of family.

I’m hoping that the next time we all get together Mymom is able to enjoy it while wearing her ultra chic clothes and not a sling.

Love, Jess

Mymom is heading home today and Anna and I are going for a visit tomorrow and meeting up with Kate and Baby Carlos – THAT will make everyone feel great!

Day +4003 (not a great day)

Day +4004 . . .

4004 days since Jack’s transplant. Almost 11 years. Over half of Jack’s life.

Our family lives our lives marking everything with before or after ALD barged into our world. Don’t read that last sentence and feel sorry for us. Most days after ALD are just fine, and many days after have been wonderful.

We’ve created lives that work – thanks to smiles and our duct tape. We have our Anna’s sweet disposition and busy schedule keeping us on our toes and filling our dinner-time with stories. And, we have Jack’s mood that sets the tone for everything we do. Sometimes I feel like I float between two worlds. Attending an IEP meeting in the morning where we discuss things like “teeth brushing” and “using a fork” as long-term goals and then head off to watch Anna run down a lacrosse field effortlessly to score several goals. Most days I go back and forth seamlessly, enjoying each of my children and their lives.

Yesterday was NOT one of those days.

Yesterday started shitty. I won’t go into too much detail, but just imagine cleaning up a nineteen-year-old and his bed after what I’m assuming was a mexican lunch the day before. I was scrambling to get through that mess, when I noticed that dear Anna had managed to switch the laundry the night before WITHOUT switching anything that did not belong to her. This was followed by a lot of yelling up to her bedroom (those stairs are too steep for me), “This is not a hotel!! You need to do your part around here! You are NOT in college yet young lady!”.

I was already fuming as Jack and I then went through the rest of our morning routine as quickly as possible so that we could head off to the Social Security Administration. It seems that we had been “randomly been selected” to come in for a follow-up interview to determine if Jack still qualifies for Social Security. This was our fifth visit and third time being “randomly selected” in less than two years.

 

Flash forward five hours —— I was crying uncontrollably to the young woman across the plexi-glass, “How many times do I need to tell you guys that my son is disabled? We have countless letters from doctors and teachers. He is not going to get better! He will never have a job. Never! His disease has stolen any hope of a normal life where he can work and live independently and support himself.”

I wasn’t finished, “There might be people in that waiting-room over there that are trying to take advantage of the system. I assure you that Jack is NOT one of them! Wanna look up ALD on Google? Wanna spend a day with Jack and tell me that there’s a chance of him NOT qualifying for Social Security? Why are you wasting your time and tax dollars on cases like ours?” and “No – our address hasn’t changed. No – our phone number hasn’t changed. No – Jack does not have any new pay-stubs to share with you. Why the hell couldn’t we have answered these questions over the phone? WHAT the hell is wrong with you people?!?”

After my rant, she apologized, but all I could do was help Jack off his seat, grab the paperwork (where she’d added her direct number “just in case we get another letter”) and walked out the door without a word.

I drove home yelling at the world and then laughing with Jack who I could see in the rearview mirror making funny faces at me. The wait, the questions – none of that seemed to bother our boy, but his crazy mother he sure found hysterical.

I realized half way home that I’d forgotten that I was teaching an art class at 2:30. It was 2:00 and we hadn’t eaten since breakfast (Social Secuirty rules include: no eating, no drinking, no phone calls, and go to the bathroom at your own risk – you miss your number? too bad). I called my boss and explained that I would be late and I would be bringing a special guest to my class.

I usually love the opportunity to introduce Jack to children, but I was running so late that I was too worried about finishing our project to do much of an introduction. My kindergardeners kept looking up from their Blue Dog inspired paintings to check out Jack and ask things like, “If he can’t speak how do you know what he wants for dinner?” and “What’s with those funny leg things he’s wearing?” and “Why is he trying to eat the craypas?”

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I did my best to answer their questions with a lite, age appropriate spin, but at one point I got so distracted that I rammed my toe against a table. It was like The Powers that Be were having a lot of fun torturing me. I’ve never been happier to see parents arrive for pick-up.

Our last event of the day was Anna’s lacrosse game. Swinging back to a fun event seemed like a great idea, but after ten minutes of watching the Cougars, a storm rolled in and we needed to run (Jack hopped) to the car to drive home in the wicked weather. Jack and I walked into the house drenched.

I went through the motions of dinner, bath, bed, just wanting the day to be over. I was starting to breathe again, even laughing with Dan and Anna about the events of the day, but the crappy day was not quite over.

As I got into bed, I felt a sharp pain. My toenail had fallen off.

Love, Jess

Today is a much better day. No sad looks if you see me at the grocery store. I promise I am back to being cheery mom/wife/friend/teacher/writer. Day 4003 stunk, but most days after ALD are just fine. 4004 days and counting!!

 

 

a ski weekend, the Jack Pack, and next year

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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.

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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

 

 

HoliDAZE

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.

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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

 

THIS is ALD # 5 — Mason

We are busy celebrating Anna’s big news and preparing for the HoliDAZE, but wanted to take some time to introduce you to another ALD champion, Mason.

I met Mason’s mother, Tina, this fall and she agreed to share a bit of their ALD story. Tina is a remarkable mother and, I’ve not met Mason in person, but I’ve fallen in love with his smile.

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THIS is ALD #5 — Mason

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        Mason was the best baby.  He developed all milestones at or before the age he should.  He was riding a bike without training wheels at 3.    We had no concerns with his development until second grade.  He had a hard time with multiple step directions and with math (common core).  He would have a concept and then it would be gone. He would bring his math papers home and I would erase them and give it to him to practice.  He didn’t remember ever seeing these papers. 
        Mason was diagnosed with Adrenoluekodystrophy (ALD) in April of 2016.  He was 8. We were told there was really nothing that could be done.  We have an awesome support system and everyone started researching and found the team in Minnesota (University of Minnesota Pediatric Blood and Marrow Transplant Program is a leading program for treating ALD) .  We made our first trip to Minnesota in May where they decided Mason was a candidate for a bone marrow transplant.  His Loes score (the scoring system to evaluate the evolvement of X-ALD) was on the high side, but Mason’s doctors said he was compensating very well with what the disease was doing to his brain.  They were hopeful.  We were so scared but this was the first time someone gave us hope. 
        Mason had his bone marrow transplant on July 11th, 2016.  We spent 30 days in the hospital and then we had to be in the area for 3 months (some hospitals release transplant patients to rehab centers/other local facilities once they have reached a certain milestone. In Mason’s case it was to a Ronald McDonald House near the hospital).  By this time, he lost a lot of vision, hearing and processing skills.  When we left the hospital, he was in a wheelchair and couldn’t see.  Even then he had goals…goal 1 was to get rid of his NJ tube (feeding tube) and goal 2 was to be home for his birthday. 
        They discharged us to go home on October 19th (his birthday is October 24th) and he was NJ tube free! 

        Mason is an incredible fighter.  He told a therapist when asked about how he felt about his vision loss that he’s not going to let it get him down.  That’s the kind of kid he is.  He is a very friendly guy and loves to tell jokes and make people laugh.  He does get frustrated with things he use to be able to do that he struggles with now, but he usually has a smile on his face. He is currently back in his school which he loves.  He kind of regressed a little with social skills since he couldn’t be around kids his age and was very scared around them.  Once he got back in school, he gained a lot of his confidence back.  He is learning Braille and the use of the white cane for mobility.  After stopping a few of his medicines, he got some of his vision back.  He can see and read but at a slower pace. We are so blessed, grateful and amazed by his progress.  We had no clue this disease even existed.  Awareness is so important.

(I’ve added a few details to explain terms that the non-ALD reader might not understand – Jess)

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Thank you Tina for sharing this piece. Mason’s story is similar to Jack’s in that there was not an early diagnosis. It’s important for everyone to remember how hard it is to diagnose ALD – why newborn screening is so vital to changing the future of this disease. Luckily, Mason had a successful transplant and is doing quite well. Life is complicated for him, but he seems to have the same great attitude and electric smile as JackO.

Love, Jess

 

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.