Category Archives: this is ALD

16 years

Posted on by

1

16 years.

5844 Days.

Two homes. Four dogs. Eight schools. Seven graduations. Many jobs. Trips to Ireland, Cape Cod, Vermont, Charm City, Disney, Massachusetts, Yankee Stadium, Italy, Maine, Block Island, Puerto Rico, Florida, New Mexico, Colorado. We’ve been skiing/tubing, kayaking, surfing, swimming, sailing, and hiking. Many tears. More laughter.

16 years ago Jack had the transplant that saved his life, but before it did it’s magic ALD stole a lot from Jack. It stole a lot from our family. 

For 16 years we’ve done our best to grab back what we could – to live big, bold, bright lives. I think we’ve done a darn good job.

Happy 16th Transplant birthday JackO! Thank you for your guidance and strength for all these years.

And to ALD – F*CK you!!!

Love, Jess

Full Circle

Posted on by

0

Yesterday was the anniversary of receiving Jack’s ALD diagnosis. 16 years since we heard the word Adrenoleukodystrophy for the first time. We were in a small room behind the nurse’s station on the 6th floor of Morgan Stanley Children’s Hospital at NewYork-Presbyterian Columbia. The room was filled with people as Dan and I sat on a small sofa trying to take in the news that Jack’s symptoms were a result of Adrenoleukodystrophy. That Jack may die. That he needed a horrible treatment if we wanted any hope of saving him. That our lives had changed forever.

Later that day, I was taking a walk to clear my head and I saw a sign — AMAZING THINGS ARE HAPPENING HERE.  All I could think was – there better F$%^ING be!

AMAZING THINGS ARE HAPPENING HERE is an ad campaign that continues at NewYork-Presbyterian Columbia. Every time I see it, I take a breath and nod my head. Amazing things are happening behind their walls. Lives are being saved, new treatments are being used, and doctors are being trained.

We learned that NewYork-Presbyterian Columbia was a teaching hospital when a month into our stay there, a pile of young faces marched into our room to meet Jack. We’d been asked if it was okay for a few medical students to stop by with their instructor. They wanted to learn more about ALD. We agreed and, later that day during my nightly call with Anna, I shared how cool it was to watch soon-to-be-doctors learn about our disease.

Anna soaked in the story. She was already thinking that being a doctor was in her future.

For 16 years, Anna’s determination to be a doctor has been incredible to witness. Her brain allowed her to excel in many subjects, but she chose to focus on the sciences. She could have gone to any college, but she chose Johns Hopkins University knowing it was the top pre-med program. She could have made some extra money working as a server or a bartender, but she instead spent countless hours working for extraordinary doctors and researchers. She studied hard, graduated in just six semesters, and nailed the MCAT exam with a top score. Although she reminded us often that there was no guarantee (even with her great resume) that she would be admitted to any medical school, she got offers at many top schools.

The last offer she received was the offer she had been dreaming of since 2007.

Anna will be attending Columbia University Vagelos College of Physicians and Surgeons!

Our family has always tried to focus less on her accomplishments and more on who Anna is in her core — a beautiful human who is kind and empathetic and knows how to get us all laughing when we need it — but today we want to focus on this incredible accomplishment!

Anna — We are so proud of who you are as a human and all the beauty add to the world. AND we are super proud of your determination and hard work and brilliant mind. YOU are going to do amazing things!

AMAZING THINGS are indeed HAPPENING!!!!!!

Love, Jess

a new routine

Posted on by

0

The house is too quiet.

It’s weird not having Booger here.

When is he getting back?

My new work schedule had us needing to adjust Jack’s care. Many of my clients are teens, so I’m working late afternoons/evenings several days a week. After juggling things around, we decided the best idea was for Jack to sleep at his other family’s house on Thursday nights.

Jack loves leaving the house on Thursday mornings knowing his other mother, Maria, will pick him up from his adult program and bring him to her home where he gets to enjoy her wonderful cooking, feeding their chickens and spending time with his other sister, Jamilla. 

Initially, Dan and I were rather excited about having a little taste of an empty nest one day a week. Over the years we’ve watched our peers have freedom that we thought we would never experience.  And, the last few weeks we have enjoyed being able to have spontaneous late dinners out and not being in charge of medication and bathing and diapers on Thursdays, but these Friday mornings are strange. Our boy may not talk, but his energy is loud. 

So, every Friday morning Dan and I have the same conversation. The house is too quiet. It’s weird not having Booger here. When is he getting back?

Last night Anna came home to celebrate Dan’s birthday (HaPpY bIrThDaY Dan!) and her latest medical school acceptances. We were tempted to cancel Jack’s Thursday plan, but he seemed angry when I brought hit up, so he was with his other family last night as the three of us spent time together trying to fill in the gaps of Jack’s laughter. It was a nice night, but he was missed.

As soon as Anna came downstairs this morning she repeated our Friday morning mantra — The house is too quiet. It’s weird not having Booger here. When is he getting back?

I just got off of Facetime with Jack and he was all smiles as Maria filled us in on how they made pizza last night, listened to Jamilla play her guitar and had a big breakfast. He loves his weekly adventures. And Dan and I do like our new routine, but it is going to take us a while to become accustomed to these quiet Friday mornings.

Love, Jess

Ever wonder?

Posted on by

5

Ever wonder what life would look like if the worst thing hadn’t happened?

Ever close your eyes and try to picture yourself going through the motions of life as it was supposed to be?

When Jack first got sick, I would wake up each morning forgetting our new reality briefly. Then it would sink in.

That first year, I could easily picture what life would have looked like had Jack not been diagnosed with a disease that within months had left him both medically fragile and fully dependent. Jack would have finished second grade over at the Marshall School. He would have continued playing little league for another year or so (but was probably getting close to breaking the news to Dan that it wasn’t really his sport). Anna would have had hair down to her waist instead of missing that 10 inches that she’d donated to Locks of Love. I would have been dreading those crazy weekends before the holidays when everyone in town NEEDED their family portraits done. And Dan’s job would have been flourishing, knowing all his ducks were in a row at home. 

We also would have taken that trip to Puerto Rico that we had to replace with an extended stay in the hospital.

A couple of years into our new life, I needed to concentrate a little more to get the visual of what life would have looked like if the worst thing hadn’t happened. Even before his disease made a mess in Jack’s brain, he was never into organized sports — certainly not the way kids play sports these days. By middle school, I pictured him being one of those kids with a skateboard in hand and holes in his jeans that were earned, not purchased. His beautiful smile making even the cranky neighbors forgive him for cutting through their lawn and paying music too loud with his buddies. Without being exposed so early to the power of science, Anna may have chosen to focus on her other love — art. She might have had parents who paid a little more attention to her – to her schedule, her needs. I might have given up family portraits to go back to teaching art full time. As a family we might have even gone abroad for a few years taking advantage of a job opportunity for Dan.

Now this fictional story of how life was supposed to be is impossible to imagine. As much as I tried not to let it happen, Jack’s disease has been the center of our lives for 16 years. It has defined our family. Jack didn’t finish his time at the Marshal School, he never returned to little league or rode a skateboard. He didn’t go to college or trade school. Instead, he went to special schools for the multiply disabled, has become accustomed to needing help with everything from eating to toileting, and had to learn how to make that magical smile of his be his only source of communication. 

But things aren’t so bad.

Jack’s in an adult program now where a typical day involves pushing his friend’s wheelchairs, doing simple arts and crafts, being fed by an aide, and laughing. Anna is on her way to medical school in a few short months (her likely focus is reproductive endocrinology – a specialty we’d never known existed before this new life). Dan has enjoyed a wonderful career in finance, but his priorities include having the flexibility to be able to get Jack up in the morning – hearing them in the bathroom listening to 70s on 7 as Dan bathes his only son is how I wake up each morning. And my life is completely a result of the worst thing that ever-happened to us. I’m a writer, an advocate, a therapist – all things that would have been — not just unlikely, but impossible 16 years ago. Impossible without living through the worst thing in our lives.

If I could — I would change our journey. I would trade all this for what life had promised us before the worst thing happened. There is a reason I still call it the worst thing that ever happened. BUT it did happen and it left, not just scars, but the knowledge that we can heal. That we can survive and even thrive. 

So I try to look at our family now without thinking too much about the before and after the worst thing. I try to focus on who we are and what we are doing now. Maybe this is life as it is supposed to be.

Last month our family finally took that trip to Puerto Rico. It may not have been the trip it would have been without the worst thing, but it was beautiful. 

Love, Jess

It’s not easy bein’ BLUE

Posted on by

0

It’s not that easy bein’ green
Having to spend each day
The color of the leaves
When I think it could be nicer
Bein’ red or yellow or gold
Or something much more colorful like that

Kermit the Frog

It’s not easy being BLUE either.

ALD makes a lot of people in our community blue. It’s a disease that effects 1/17,000 people worldwide and causes symptoms including adrenal insufficiency, loss of vision and hearing, learning disabilities, seizures, loss of speech, fatigue, bladder and bowel issues, loss of mobility, and if not treated early (** and without a certain amount of luck) can lead to death.

While there’s so much to make us all blue, there is reason for our community to celebrate.  ALD is a disease that has made some HUGE strides in the last few decades – improved treatments, new treatments, and newborn screening. The momentum is has started and we can’t let it slow down.

A year ago, my friend – and ALD warrior, Janis Sherwood, – had a magical idea. We always discuss possible ways of how the ALD community can better spread the word about our disease. Blue being the color connected to leukodystrophy awareness, Janis’s plan was — ALD Makes Me Blue. She wanted to turn our ALD blues into ALD BLUE — Dye our hair BLUE, paint our nails BLUE, wear BLUE, paint our whole darn bodies BLUE. She wanted our community to turn BLUE and then pass it on, like a dare. 

Janis didn’t stop there with her plan. She wanted to have a way for the public to learn more about ALD and even make a small (or HUGE) donation to one of the many ALD organizations.

ALD organizations connected. A website was created. ALDMMB got itself onto social media. Some sore of fancy filter was put on Instagram: https://www.instagram.com/ar/538958721328767/

Today is the day!!!

February is Rare Disease Month and it’s time to turn the world BLUE!! Our family is going to start our month of BLUE and we want you – our duct tape – to do the same. Make yourself BLUE and don’t forget to take a photo and post it on Facebook and/or Instagram and TAG friends!!! 

Please take a peek at the site, learn more about ALD, be BLUE, and make a donation.

CLICK HERE — ALD MAKES ME BLUE

GO BLUE!!!

Love, Jess

packing up

Posted on by

1

Craving sun and time just the four of us, we’re heading to Puerto Rico tomorrow for a long weekend. The timing is a little wacky with the start of my new job, but it was planned months ago. Thank goodness for a flexible boss.

I’ve spent every free moment this week preparing for the trip. Making sure we’re all set for our friend to care for the house and the doggies, making sure my fingers and toes are fresh and pretty, picking up sunscreen and travel shampoos, and packing. Packing for a trip is complicated for our family. It’s not just clothes and toiletries, it’s the diapers and medications and pee mattes. It’s the thinking of all the what ifs and making sure we’re ready for anything that might come up. Five days away has somehow created five large suitcases. 

Still – I feel like I’m forgetting something.

We’ve taken big trips with Jack in the past, but it’s been a few years since we’ve flown anywhere with him. We’re lucky (and grateful) to have one set of grandparents with a lovely home just an hour away in Tuxedo Park, NY and another set with a beautiful place in Block Island, RI. Loading up for those trips is a challenge, but there’s no need to worry about a forgotten item or two. There are local stores and Amazon delivers quickly. For this trip we want to make sure we don’t forget a thing. AND then there’s the other lingering concerns – like potential winter weather and getting Jack on and off airplanes without any incidents!!

Crossing our fingers for no poops at 36,000 feet!

Traveling with Jack is not easy, but what great things in life ARE EASY??? There may be a poop emergency along the way or perhaps an extra stop or two for some hydration through his g-tube, but there will also be long, magical walks along the beach where Jack’s mindful pace allows us to relax and really enjoy the view. We’ll get to spend time with Anna and hear all about her gap year escapades. We’ll get to watch Jack’s expression as he tries new foods and witness him charm the locals.

No matter where we are, Jack seems to gain more fans. 

Time with our family of four is always filled with adventure and laughter. Add sand, delicious food and the smell of sunscreen — and we’re all set. I promise to share photos when we get back.

Love, Jess

We’ve rented a lovely little home right on the water. Although the views and beautiful little pool for JackO were selling points — it was the washer / dryer that really sold us. Life with Jack is beautiful, and often a little messy.

a new chapter

Posted on by

6

Sixteen years ago, Jack was falling apart. He was struggling in school and becoming increasingly withdrawn. He was stumbling to find words and getting lost with any simple task. April of that year we finally received a diagnosis and our lives changed forever. 

The remainder of that year – and several years following — was a blur of hospitals and doctors and blood work and scans. It was also a time of fear and guilt and frustration and anger and sadness.

When we finally got our heads above water, I swore to myself that moving forward I would do whatever I could to help other families who were fighting similar battles. Our family started making Boxes of Fun for children on the BMT floor at Morgan Stanley’s Children’s Hospital at Columbia Presbyterian. We started hosting bone marrow registry drives. I started sharing our story on our blog, in online publications and eventually got a memoir, Smiles and Duct Tape, published. I became more active in the ALD community and the special needs community in NJ. 

In the fall of 2020 (like so many of us during COVID), I felt like I needed a change. I was sitting with one of Jack’s other mothers telling her that I wanted to start a new chapter but not sure what to do next. She asked me what brought me joy. I answered quickly helping other families like ours. She asked me if I could do anything to help, what would I do. Being a therapist seemed like the answer–but what about the money, the time, my age?

Thanks to the support of my family and friends, I didn’t listen to the doubts. I dove in and by January 2021, I was working on my MA in Mental Health Counseling for Mental Health and Wellness at NYU. My goal of working with special families has never wavered, but I did find that I also loved working with children, adolescents, and adults who were struggling with a broad range of issues. 

Helping people who are working through life challenges to reach a place of acceptance and to discover new, empowered perspectives—that may be the best way to describe my strengths as a therapist.

I graduated with my MA in September and survived NJ’s paperwork (I am pretty sure the paperwork alone is a test of how devoted you are to being a therapist). I’m now FINALLY pleased to announce that I’ve started with a wonderful practice. 

https://www.elanarosencrantz.com

Thank you to everyone who helped me reach this new chapter — particularly Monica who helped me define my goal, Mymom who supported me and reminded me that you are never too old to make changes, my friends who are my constant cheerleaders, Dan and Anna who were my editors and rarely rolled their eyes as I talked about theories, and Jack who is the best supporter, motivator and a darn good therapist himself!

Love, Jess

Welcome 2023!!!

Posted on by

2

Welcoming a new year is a great opportunity to start fresh. We’re planning the usual suspects of resolutions – Dry January, exercise more/eat less, books over Bravo – but we also have some huge changes coming up in 2023.

Anna will be starting medical school this year. It’s still unclear as to where she’ll be going, but she has already gotten accepted into six wonderful schools, including Johns Hopkins. It’s safe to say that she is going to be going to a great school and continue to head towards her goal of helping people lead healthier/less complicated/more comfortable lives. She also has her Art by ACT keeping her busy as well as a great research job at Kennedy Krieger. And, she is not finished exploring through travel – just last night she mentioned upcoming trips to VT for skiing, CA for adventure and there was something about a cross country trip. I wanna be ANNA!

I also have some big changes for 2023. I thought I would dive right into working as soon as I graduated with my MA, but I’ve been rather picky. I went into this with a very specific plan in mind – I want to be a therapist for special needs families (even more specifically the siblings of children with special needs). Of course, I look forward to working with any human who is struggling through any challenge, but I wanted to make sure I landed where I could learn and grow while working towards my goal. I found a great fit and should be starting soon (details will follow). I miss being busy. I miss working. I’m ready.

Dan has been on a serious health focus leading up to 2023. I’m hoping it’s as contagious as the stomach flu that went through our house a couple of weeks ago. He continues to work in crypto currency — which has been a challenge but very interesting lately. Dan is also eager to plan some fun family adventures and I can’t wait to see what he comes up with!

Jack is keeping his own plans to himself – an advantage of being non-verbal – but I have no doubt that he is looking forward to fun times at his adult program and spending oodles of time with friends, family, and his other families. Jack may be one of the few people who greets each new year with a simple “Hi. It’s going be another great year!”

We are all wishing everyone a very happy new year and hoping this year brings you all joy, purpose and a whole lot of laughter!!!

Love, The Torrey

Lucky Number 31!

Posted on by

2

Monday, December 5th, NJ began screening newborns for ALD. They are the 31st state in our country that has added ALD to their newborn screening panel. 

What does that mean? 

It means that people in NJ will no longer receive a late diagnosis for ALD. 

What does that mean? 

It means that families will now be provided with knowledge and the power to monitor their children and treat ALD if/when needed. 

What does that mean? 

Jack’s story will be part of the history of our disease.

I try not to focus on the what ifs, but I will to help explain the enormity of this news. What if ALD been part of the newborn screening panel in NJ 25 years ago? We would have known that Jack had ALD shortly after his birth. We would have likely struggled to hear this news about our perfect, chubby, healthy first born, but we would have gotten through it and moved forward. We would have learned about ALD and found doctors who knew the disease. We would have been prepared. When Jack was a young boy, we would have recognized that Jack’s reactions to a simple illness where a result of adrenal insufficiency and that his behavior was not defiance or ADHD. We would not have wasted time. We would have gotten him treatment sooner. Had ALD been part of NJ newborn screening panel 25 years ago, Jack would have had a stem cell transplant earlier and he would likely be living a very typical life today.

It’s not just the pain we could have avoided. It’s not just the lack of words and independence and need for constant care. NJ spent well over $1,000,000 on Jack’s education. He now receives SSI, Medicaid, and support from DDD — and will for his entire life. Jack’s life is complicated/fragile, and he is also expensive to care for – for us/our state/our country.

So, this is a win WIN for future parents, NJ, taxpayers, and people who believe in the power of science!

I shared this news on social media yesterday and received a lot of notes assuming our family had a large role in this exciting development. We are very small fish in this beautiful pond. Elisa Seeger and the ALD Alliance, Taylor Kane and Remember the Girls, ALD Connect, and the piles and piles of doctors, parents and advocates made this happen!!! 

There are still too many states who are NOT testing for ALD. If you live in one of those states, please let me know and I will connect you with people who can help you help to make it happen.

Love, Jesse

Where was I?

Posted on by

2

Just coming down from a magical weekend full of time with Mymom and Anna, hanging with old friends, meeting superheroes, and listening to informative, brilliant, inspiring information. Where was I?

ALD Connect’s Annual Meeting and Patient Learning Academy!

When I was asked to speak at the conference, I was honored but intimidated. Being among so many people who are changing the direction of our disease, I wondered what I could contribute. “The Burdens of Caregiving” was the topic. After some discussion we added “and Joys”. THANK GOODNESS – I couldn’t imagine spending 30 minutes listing burdens!!

I included two other ALD stories – other phenotypes of our disease — so that I could share a broader picture of what caring for a loved one with ALD looks like. Thank you Miranda and Laurie for your honesty and perspective (two of my ALD superheroes). I ended the presentation with a little story that I thought I would share here.

Three weeks ago, I fell. Just out walking my dogs, enjoying the fall weather. I can’t tell you exactly what happened – or if my own ALD had something to do with it — but suddenly my feet got confused and I hit the ground, hard. I broke a rib and without any notice I wasn’t able to do any of the caregiving that has defined my life for the last 15 years.

Anna came up from Baltimore to help out. She had to get Jack up and ready for school which can be a bit of challenge. One morning I heard her get Jack out of bed and then I heard a few comments about a mess. I watched from the couch as she walked to the laundry room with a big pile of laundry. A few minutes later, she walked through again holding a bag that I could only assume was a very soiled diaper.

“I am so sorry you need to deal with that Bananz”

“No worries mom – Sometimes you’ve just gotta wash your hands and move on”

And that is just what she did. A minute later I heard her singing along with 70s on 7 while dancing with her brother in the bathroom.

I think it’s important for us caregivers to remember that there will be a lot of messes to clean up – a whole lot of burdens – but if we can learn how to wash our hands and move on, we have a chance of appreciating some of the joys of caregiving.

Thank you, Anna, for your words AND your attitude!!!

Love, Jess