2 shots (8 total) and 1 shoulder

It’s hard now to find the time to sit down and write something that’s not about a specific therapy or therapeutic practice, but I wanted to sneak away form my studies and fill everyone in on some BIG news — The Torreys of MAPSO are now fully vaccinated!!!!

You may have heard that the second dose of either COVID-19 vaccine often results in a crappy day – fever, joint pain, chills and other “crappy” stuff. Both Dan and I each had a day feeling the effects and were worried about how Jack would do. We spoke with his doctors and decided the minimal risk of a reaction was outweighed but the HUGE reward of protecting him from the virus. We did stress dose him with his steroids for a day following the second dose and kept him super hydrated. Then we watched him like new parents watching their newborn breathe. The only one who had any side effects from Jack’s second dose was me, because I was waking up constantly to check on him. Jack got through it like a champ!

We are so relieved to be on the other side of the vaccine. We are not planning any big trips just yet, but looking forward to not freaking out about every trip to the grocery store. AND, we are excited to be part of history and part of the solution to reaching the end of this crazy pandemic.

In other medical news – Dan had a shoulder replacement today. It’s been a long time coming and he is eager to see how this new one works. Not sure he will be pitching for the Yankees any time soon, but he is excited to be able to raise his arm over his head.

Back to my school work for now. Look out for another post soon about the next Camp-at-Home ALD Family Weekend at the Painted Turtle!

Love, Jess

Day +5000 (a post from Dan/Dad)

Day 5000


Lately I’ve been distracted.  Distracted by the lousy weather outside the window.  The cold.  The grey sky.  The snow piling up… Distracted by the inane MTG politico drama playing out on TV every day and night…  Distracted by work stuff ( I just started a new job this week).  Work can sometimes be a positive and useful distraction – especially when living through the first 12 months of a pandemic (Yes, we are now in our 12th month…).  But at the end of the day, it is still a DISTRACTION.   


Sometimes the only part of the day when things come into focus, when my mind clears, when I shed all the distractions is when I get a giant hug from Jack.  It’s the best part of my day – every day. 

 
Even if you haven’t spent a lot of time with Jack, you know that he is non-verbal.  But you probably can’t fully understand how he communicates most directly and most effectively.  It’s when he gives you a hug.  He is extremely strong.  He will literally squeeze the breath right out of your chest.  It’s the best feeling in the world.  It’s when I regain all perspective — as I squeeze back! 


Today is Day 5000 in the Torrey house.  It’s been 5000 days since Jack received his stem-cell transplant in May 2007.  Since the doctors at Columbia Presbyterian Hospital saved my son’s life.  5000 days of a wonderful life.  5000 days of smiles and belly laughs and hugs and dancing to 70’s tunes.  5000 days of watching him and his baby sister grow up to be adults.  5000 days of “our normal life” with Jack.  


Think about what has happened in your life over the last 5000 days.  It’s hard to grasp all the changes, the good and the bad, the ups and downs,  the mundane and the thrilling, Hell, some days I can barely remember life before COVID.  But Jack and his hugs help me remember what is really important in life.  Not the distractions.  That’s nothing but a lot of noise.


Thank you Jack for being in my life. 


Love,
Dad 

4999 Days

Day +4999 . . . 

4999 days since Jack received the stem cells that saved his life. 4999 days ago we never could have imaged what our lives would look like now. And if we had, I’m not sure that we would have thought that we could embrace lives that look like this. 

A few days ago incredible members of our ALD community lost their son. It wasn’t ALD that ended the life of this beautiful young man, but an accident. We’ve known many people who have lost loved ones this year. Not ALD, but COVID, cancer, heart attacks. Life is complicated and fragile and we need to appreciate every day. Our family is grateful for the last 4999 days and will treasure each day ahead of us.

I’ve been writing tiny love stories for the last couple of months. The New York Times keeps passing 😏, but I’ll share what I wrote last week. 

I open the door that separates our rooms and look at him lying there. The most beautiful face I’ve ever seen. As if in a trance, I crawl into bed next to him, trying to be careful. His bed is littered with complication. I slowly take his hand and place it between my own. I hold my face against his and I linger over his sour breath. There is always so much I want to tell him and sometimes wonder when we’ll run out of time. Tonight I will just be quiet and enjoy the moment with my beautiful boy. 

4999 days.

Love, Jess

PS Stay tuned — Dan is working on a post for tomorrow.

She Can’t Sing

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She can’t sing.

I mean that seriously. She’s terrible. Like – hurt your ears bad. What makes it worse is that she tries. Sings loud and proud, but she shouldn’t. Because she’s dreadful.

I know it sounds mean, but we point it out whenever we have the opportunity. After all, isn’t that our job as parents? We can’t always just be applauding her.

Anna excels at academics, athletics, and artistic ability. She’s kind and graceful and beautiful. She’s generous and funny. It’s a little obnoxious, so we feel like it’s important to remind her that she will never be on The Voice or on Broadway. And, if she cares about people’s hearing — she should never even sing karaoke.

I wish I could take credit for half of who Anna is, but I think she is who she is because everything just came together and fit — like one of those 1000 piece puzzles with a huge amount of sky. You think there’s no way anyone can make it happen, but it does (at least on Block Island with Nana Sue taking the lead).

Anna was born determined and smart and when life changed for our family, she managed to get what she needed and continued growing and learning. I’m proud of all of her accomplishments, but when she does something that I can actually understand, I’m in awe.

Anna wrote a blog piece for Remember the Girls — an incredible organization founded by Taylor Kane, created to give a voice to women/carriers of x-linked diseases. Anna wrote about being tested for ALD. Her voice shines through in this piece and I couldn’t be prouder. She can’t sing, but she can write.

My Experience Getting Tested for the ALD Gene

Love you Banana.

Love, Momo

Calling all ALD caregivers!!

If you are an ALD caregiver for someone who has received an allogeneic hematopoietic stem cell transplant, please consider participating on this advisory board. It coincides with this year’s ALD Connect Annual Meeting.

Love, Jess

bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into the current allo-HSCT experience and unmet need, and perspectives on education gaps and current patient services for the community in the United States.

Please note that all interested individuals will go through a screening process and not all who are interested will qualify. For those who do qualify, an honorarium will be provided in compensation for their time as well as hotel accommodations for the night of November 6 and 7. For those participants who are not already anticipating attending the ALD Connect meeting, a travel stipend may be available.

For more information contact:

 Liza Fiore (Snow Companies)

1-866-375-7249

elizabeth@mypatientstory.com

 

 

 

THIS is ALD #26 – Hutch

Chelette reached out to me to share her son’s story and I was so impressed with how determined she is as a mother. Many of us ALD moms have been forced to fight with doctors to find the correct diagnosis for our sons. In this family’s story, this mom wasn’t just fighting for her son, she was fighting for answers to other questions in her family’s history. Thank you Chelette for sharing Hutch’s ALD story.

 

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THIS is ALD #26 – Hutch

Our son Hutch was a perfect 9lb. baby. As a child he was kind, bright and athletic! Hutch was the kind of kid who never had to be told twice and never needed to be put in a time out or punished. So when he was nine-years-old and we started seeing changes in behavior and struggles in school, I got concerned. I started telling doctors that something was up, but everyone blamed adolescence.

Hutch had febrile seizures as a child that no one seemed concerned with.  He had a seizure when he was six (almost out of normal range for febrile seizures) so I spoke with a neurologist, but he was not concerned. Then Hutch had another seizure when he was nine, so I saw another neurologist. She actually told me he would never have another seizure and not to worry about anything. This was not believable to me. At every neurologist visit I would always share that my dad had a neurological disorder, but still no one listened to me. They all blamed adolescence. 

My father had some neurological issues that started around age 28. His gait changed and he started to drag his legs while walking. No one was ever able to give him a true diagnosis. They said he had spastic familiar paraparesis, which never felt right to me.  His skin was very dark and he was bald.  By the end of his life, he was wheelchair bound (he could walk, but it was too taxing on him). He died during an angiogram at age 51.

I became so concerned by the time Hutch was nine-years-old, that I took him to see a neuropsychologist, an audiologist, a few neurologists. No one seemed concerned. He had what seemed to be auditory processing disorder and he had attention issues but no hyperactivity so again doctors were not convinced there was anything significantly wrong. Every direction I turned, we could not find an answer. 

In November of 2015, 3 days before his 13th birthday, Hutch had a 90 minute seizure. Yep, that wasn’t a typo, he had a 90 minute seizure … I didn’t think we would see him again. Miraculously he survived and that seizure was an important piece to the puzzle. The hospital we were in didn’t have a pediatric neurologist so they consulted with a pediatric neurologist at Tulane. When we were being discharged, they told us the neurologist had ordered a metabolic evaluation. I knew at that moment we were finally going to get the answers we needed.

Two weeks later we sat in that neurologist office and he spoke those words that we were not prepared to hear. He said our son had Adrenoleukodystrophy, that he would more than likely die within 2 to 4 years, most of which would be in a minimally conscious state, unable to walk, talk, eat, etc.. (he actually used the word vegetative state but I hate that word because people are not vegetables). He said Hutch would most likely die during a seizure and there was nothing that we could do to help or stop the disease as he was too far progressed (spoiler alert, he was wrong about the last part!).

My husband was completely devastated. Oddly, I was still so grateful that Hutch had survived the seizure that finding out we had 2 to 4 more years with him still seemed like a gift. Within a week we were in a geneticist office, he asked what our plans were and we told him that we have been vetting hospitals just to find out more about the disease and what our lives would look like. He pointed us in the direction of the University of Minnesota. He told us they had treated more boys with ALD than anybody in the world. At this point we did not think Hutch was a candidate for transplant based on what the neurologist we met with had told us — thank God he was wrong. 

One thing led to another, and the first week of January 2016 we were consulting with an amazing team of doctors at University of Minnesota to see if our son would be a candidate for a bone marrow transplant. At the end of our time there, they told us that they felt like Hutch would be a candidate. They didn’t know if he’d be able to live an independent life as an adult but they felt like BMT would preserve his physical abilities. We were thrilled AND scared to death!  

Two months later, on March 16, 2016, we moved to Minneapolis for a BMT that took place on March 22.  We lived in the hospital for 40 days and then stayed in Minneapolis for the next 2 months. Hutch did exceptionally well through his transplant and we moved home at the very end on June. Then life got really difficult. 

Hutch‘s case is different than most boys with ALD — his disease started in the front of his brain and there is no damage to the back of his brain. This means he has all of his physical ability still intact, but the front of his brain is profoundly damaged, so he can often look like a traumatic brain injury patient — he is impulsive, often inappropriate, and has no filter.

Anger and rage took over his body once we got home from Minneapolis.  Our girls, who were 15 & 10, had to move out of the house for a while because he was so out of control. Thankfully, better management of his dosing schedule of hydrocortisone, some amazing vitamins and blood pressure medicine worked and little by little we got our life back. 

It took about two years following transplant for us to see a little light at the end of the tunnel, but now Hutch is in school and and loving life. He swam on his high school’s swim team and played golf for his school team also! He needs many accommodations, but he is smarter than he appears on paper. 

We are very grateful for Hutch’s diagnosis, because as hard as it is, it saved his life and it explained all of the issues he was having. With Hutch’s diagnosis we determined that my dad had AMN (adult onset version of ALD) and more than likely died during an angiogram due to undiagnosed adrenal insufficiency.

Our lives are very different than we ever imagined, but also better than we expected following transplant. Because of Hutch is a poor decision maker and struggles to self-regulate, he needs constant supervision. But, he is here and has taught us a lot about life and the dignity of life. ALD took a lot away from us but it also gave us more than we could have ever imagined. 

— Chelette

 

 

THIS is ALD #25 — Grady

Ten days ago I got a text from a dear friend from MA, “Watching the news on NBC – it’s about newborn screening for ALD.”

I stopped what I was doing, went to the computer and Googled — NBC, MA, ALD and this popped up.

CLICK HERE

I thought, What a great ALD story! I should reach out to this mom. Within a day, we found each other — ALD is a small world (and thanks to social media, it’s getting smaller every day). We exchanged notes on facebook, emailed back and forth, and then spoke on the phone. For me, it’s like talking to an old friend when I find another ALD mom. I asked her tons of questions and let her share and vent. Of corse, I also asked her to please let me share her family’s story on THIS is ALD.

THIS is ALD #25 — Grady

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I thought he had too much wax in his ears. That’s how this started, wax. My boys always have gross waxy ears, no matter how much I clean them. Pretty gross right? I thought Grady couldn’t hear me well because of waxy ears. 

So after about two weeks, I decided to bring Grady to his pediatrician. She checked and they were clear. We proceeded to do a hearing test. He passed. Gut punch #1. 

His pediatrician suggested we follow up with ENT. I asked if it could be neurological. She didn’t think so, everything else was perfect. About an hour after we got home, she called me saying, “You are not an alarmist with the kids, let’s see an ENT today”. 

She got us in and he passed most of the exams. Gut punch #2. I knew something bad was coming. My husband and I took Grady to Boston Children’s Hospital right from the ENT. I felt like we had to push to really get them to listen. Neuro came and did a consult. Grady’s so strong. A crazy NATURAL athlete. How could it be his brain? Physically he checked out perfect. Then, the doctor asked, “What is 3×4…” Grady said, “Football”. Now we were crying. Something was really wrong. 

They came back and said they felt he was fine to go home, and out came Mama Bear. We told them we did not feel comfortable bringing him home. Twice. We told them SOMETHING is wrong with our son. I begged to scan him then. Sobbing. They felt a scan could wait and would book it in the weeks to come. 

So we went home. Sick to our stomachs. 

The next morning I woke up, called the pediatrician, and told them that I was bringing Grady back to Children’s and I wasn’t leaving until they scanned him. Long story short, a few frustrating hours later, they did. Gut punch #3…….and the death of the “old me”

They told us that they believe that Grady had ALD. What the hell is ALD?!? I Googled it, alone in the “quiet room” after an ER doctor told me not to. Google was obviously lying because there was no WAY my football and basketball obsessed boy was going to die in 1-5 years — slowly deteriorating to vegetive state, to death. No way. Someone was was wrong, and they wanted me to call my husband and tell him this?? Part of me died then. 

We lived 5 days — well not lived, we walked around somehow and tried to take care of the kids, while in the back of our minds we were thinking about losing our son. Then, we met Dr Eichler and Catie Becker. Two angles who told us that we would not lose Grady. With a Loes score of 10, they felt that perhaps Grady might lose some hearing, some vision, he might have a change in his gait. We could handle anything as long as he was with us. With newfound strength we got ready to fight. 

We met angel #3 a short time after — Dr Christine Duncan at Dana Farber. Grady ended up with an amazing 10/10 unrelated bone marrow match right away. Grady’s brother Colin tested negative for ALD and everything went just so fast from there. 

Admitted to the hospital on 9/11/18 and met what came to be some new “family” members (his loving nurses) and chemo started the next day. Grady was a rockstar. Me, not so much – I dubbed myself “the neurotic mom in room 613” . He was transplanted 9/20/18.  Celebrated his 8th birthday on 10/2/18 and also started engrafting that same day. We were home 10/11/18.

The fear really set in when we got past transplant, but there was still this ALD we had to process. Every little thing Grady did I was so scared…is this progression?  He blinked 3 times more than he did 5 min ago….is this progression? Every single day that kid was outside throwing the football. Making one handed catches. Working out to get his strength back. I still panicked over everything, even though I was told by his NP, “If he is out there making one handed catches, you have no right to worry about progression “. 

I still did.

We were also trying to come to terms with some signs of ALD that presented post transplant, like an Auditory Processing Disorder. Grady can hear us, but he stuggles to understand language. Luckily – that’s his ONLY deficit. He is a miracle boy!

Other than not really looking like Grady from all the prednisone and stupid hairy cyclosporine, he is still the same Grady, but he is angry.  So angry, and rightfully so. Some days are better than others, but he is here and doing amazing. 

Grady’s follow up MRI was also a miracle. Not only was there no progression, but his lesion has also gotten smaller. They are not sure why, and have only seen this once before, but smaller. Miracle. We also found out that I am not a carrier. Grady spontaneously mutated. More crazy to add to our story. 

We still have a long road ahead of us. We have had a couple readmissions that seem to come with the BMT world, but he is doing amazing. There is hope – so much hope.  

This disease is awful, but if he has to have it, I’m glad to have found the people I have in this ALD community. The Smiths might be one small family, but we are joining the cause and going to help do big things!!!

#NBS #ALDawareness #toughtimesdontladttoughpeopledo #yougottabelieve 

💙

— Jillian

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Jillian is amazing. Without her determination to get answers, it would have taken weeks or months to get the proper diagnosis. If you have followed any THIS is ALD stories, you know how important an early diagnosis can be. I’m not actually sure of when (or if) Jillian sleeps, but Grady is one lucky kid to have her as a mom and the ALD community is lucky to have her on board. She’s only five months into this journey and already she’s determined to dive into sharing her family’s ALD story and raising awareness for our (not so rare — about 1/15,000) rare disease. Since she sent me this story, her family was on the news again. 

With the Super Bowl just days away, all you Patriots fans will love that Julian Edelman is a fan of Gradys — just like the rest of us!!

CLICK HERE

Jillian — Thank you for sharing your family’s story and we look forward to watching Grady’s progress as he moves on with his beautiful, sports-filled life.

Love, Jess

 

 

THIS is ALD #23 — Mason

Are there any GOOD ALD stories? I guess we need to define the word GOOD.

good
/ɡo͝od/
adjective
“a good quality of life”

 

Jack (THIS is ALD #1), as a GOOD ALD story. He’s happy and can walk and see and hear and laugh. Although his life is full of challenges, we’re grateful that he’s enjoying a wonderful quality of life. If you look through the previous 22 THIS is ALD stories we’ve shared, you will find other GOOD stories, but sadly ALD is not a disease known for GOOD stories. As Newborn Screening spreads across the country (the world), GOOD stories will take over. Until then, a determined family, curious doctors and a lot of luck needs to come together for GOOD to happen. Mason had all three.

 

THIS is ALD.jpgTHIS is ALD #23 — Mason

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Mason was born on March 19, 2011- completely healthy according to doctors. When he was 4 years old, he was admitted to the hospital for the first time. He had gotten sick out of nowhere — started vomiting and could not get out bed on his own. In the hospital, all the tests they ran were negative, so after a few nights we were sent home with no answers. They said it was just a virus.

Everything went back to normal for close to a year when the same thing happened, but this time with a fever. Mason started vomiting and became weak and dehydrated and refused to get out of bed. He was admitted to the hospital for a few days and again all the tests came back negative and we were sent home being told it was just a virus. Three to six months later, it happened again and then again in December, 2017. It was the forth time he was admitted to the hospital with similar symptoms. Luckily, that time an endocrinologist was asked to come see him. The doctor reviewed Mason’s charts and immediately ordered an adrenal test. Mason was diagnosed with adrenal insufficiency and put on hydrocortisone. Before we left the hospital, the endocrinologist mentioned the word “Adrenoluekodystrophy” (ALD), but didn’t give us many details. All he said was that Mason was not showing any signs of the disease (other than the adrenal insufficiency), but to be safe, he ordered an MRI to rule it out.

The MRI was scheduled for January 25, 2018. After Mason had his MRI, I started Googling ALD, and convinced myself he did not have it because we had no family history of the diseases and he was not showing any symptoms. His appointment with the neurologist to review his MRI was on February 19, 2018 and I was calm leading up the meeting. February 19th arrived, and we got the news I thought for sure we would never hear — Mason had ALD.

I broke down and was terrified that Mason would start showing signs of the disease quickly. Our neurologist called Dr. Lund at University of Minnesota Masonic Children’s Hospital (Dr Lund is a leader in ALD treatment). Within a couple of weeks we were heading to Minnesota for our consultation for a bone marrow transplant (BMT). We were there for a week and found out Mason’s LOES Score (a determination used to rate the severity of the progression of the disease – it ranges from 0-34) was between a 3 and 4 and he was a good candidate for a BMT.

Instead of starting the process right away, they sent us home to wait for insurance to approve the treatment. That was the longest and most stressful month of our lives. Waiting on our Michigan Medicaid to approve an out-of-state BMT that was considered a “trial or experiment” (BMT, if successful, stops the progression of the disease, but is not considered a cure). For a month, a day did not go by without me crying on the phone with the insurance company or the doctors in Minnesota.

 

At the beginning of April, we finally received approval from insurance and were told that our doctors found and 8 out of 8 cord blood match. Mason had his transplant on April 26, 2018 and it went better than doctors expected. We were discharged from the hospital only 12 days post transplant.

I know Mason’s story is a miracle and I have not heard many other ALD stories as positive as ours. We are very blessed to have had the transplant in time and that Mason continues to be symptom free (with the exception of adrenal insufficiency). Michigan does not do the ALD newborn screening yet, but will soon hopefully.

-Erica

*******

Reading Mason’s story gave me chills. My hope is that stories like his will be the new face of our disease. An early diagnose, treatment, followed by a healthy life.

I’m by no means saying that ALD will ever be an easy diagnosis. Even with the “luck” of having that endocrinologist being wise enough to test for adrenal insufficiency and then following up with the MRI which properly diagnosed Mason, his family faced a lot of challenges. Fighting with insurance companies, financial responsibilities connected to treatment/travel/etc, the pain/discomfort/agony of a transplant — all these things will never make ALD an easy diagnosis. Still, the future looks bright(er).

And, Mason’s smile is super bright!

Thank you Erica for sharing Mason’s ALD story.

Love, Jess

THIS is ALD #21 — Jack M.

I have known Kerry for many years through social media. We both have sons named Jack and we both know how ALD can effect every inch of every life in an entire family – even when it only takes over one body.

Thank you Kerry for sharing Jack’s story.

THIS is ALD — Jack M.

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Jack was 8-years-old when our family was at my older son’s boot camp graduation at Parris Island. Jack suffered what look like a seizure — months later we figured out it was caused by an adrenal crisis. He was taken from Parris Island to the hospital and then we took him home to Miami the next day. The doctors refused to test for anything specific, simply saying he had Epilepsy. It took several months, and lots of doctors, before Jack was diagnosed with ALD and adrenal insufficiency.

Although the doctors in Miami told us there was no hope, I put Jack on a plane and went to University of Minnesota Hospital (a leader in ALD research and treatment) to see if he would qualify for a bone marrow transplant. They agreed and Jack was transplanted using the precious cells from his brother, the Marine.

After transplant, Jack continued to decline because the cells needed time to get to where they were needed. I’ve homeschooled him his entire life and have been able to adapt all curriculum to where he is at any given time. It also has allowed us to be flexible while we continued to pursue other treatments for him. Over the next several years I took him to North Carolina to see a rare disease doctors and several other states for answers which I eventually figured out on my own. Jack’s disease finally stopped progressing 2 years post-transplant, and he was left requiring full-time care. I am his full-time caregiver. Respiratory issues and adrenal issues keep me on my feet.

ALD has not been the only complication our family has faced. We recently went through hurricane Irma and YES we are still fighting the insurance company to repair the house so we can safely live here. Three times over the last year I have had to travel to take care of my mother who has heart condition and breast cancer. All of this has been the worst case scenario — like the board game, except I don’t hold any cards. I just do whatever is needed at the moment. One step forward, two steps back. I try to just keep pushing forward. My Marine son says I would have made a great Marine — I have been through The Crucible and back.

Since my Jack’s diagnosis and transplant there have been 5 babies born in our family and one expected this July — my grandchildren. All of my grandchildren are healthy. Jack’s ALD was a spontaneous mutation (meaning it was not inherited). ALD is now part of the newborn screening panel in Florida. I often imagine if ALD had been part of the panel when Jack was born – so much of this pain could have been avoided.

So much has happened since ALD struck our family and it’s effected a lot of our lives. I have had children graduate from college numerous times and missed their graduations. I’ve missed grand babies being born. Everything is on the back burner while I care for my son 24/7. It’s also changed the lives of my seven other children. My 23-year-old is my constant help. My 29-year old Marine just receive his third degree from college in bio medical and he also runs a tutoring company that caters to Veterans and hopes to raise money for research to develop an auto injector (to administer steroids) for those with Addison’s Disease. All seven of Jack’s siblings have been contributing to ALD awareness. They have learned first hand how ALD can effect a family. My ex-husband has moved on since Jack’s diagnosis. He is remarried and started a new family and we have no contact. Another dirty side of the storm no one talks about. 

Jack is now 18. When Jack is doing well he has a good quality of life — bowling and baseball, he has even played soccer in his wheelchair. When he’s not well I count the moments and do everything I can to keep him out of the hospital and give him comfort. Sometimes I question putting him through chemo and transplant, but I know I tried and did everything possible at each step of our journey.  Jack is still here. He is still fighting and I will fight with him. I know the Lord has the last say. 

— Kerry

*******

 

Kerry is also a children’s book writer and has been a very active volunteer with political campaigns, adding to the bone marrow registry and raising awareness for ALD and newborn screening.

Thank you Kerry for sharing Jack’s story and helping the ALD community spread the word about our not-so-rare disease.

Get Swabbed

Eleven years ago we were told that Jack had Adrenoleukodystropy and that the only way to stop the progression of this hideous disease was a stem cell transplant (bone marrow transplant). Anna, who was 6-years-old at the time, would have been the best option, but she was not a match. Our doctors were forced to look on the bone marrow registry for a potential donor.

Imagine being told that the only chance of saving your child’s life is if a stranger is willing to make a donation.

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At the time I didn’t know much about stem cell donation. Online research did little to calm my nerves. At any given time, over 7,500 Americans are actively searching the national registry for an unrelated donor and only 2 % of our population is on the registry. And, what are the chances of finding a donor? Caucasian patients – 75%, hispanic patients 45% , asian patients – 40%, african-american patients – 25%, and multi-racial patients are faced with the worst odds. Over 3,000 people die each year because they can’t find a match.

Jack was lucky. Although there were no matches on the bone marrow registry, a stranger had donated their daughter’s cord blood (another option for a stem cell transplant) and Jack received those precious cells which stopped his disease and saved his life.

We’ve helped host many drives in the last eleven years and there have been at least three lives saved by spreading the word and helping people register. We are doing it again this weekend thanks to our friend, Elizabeth Sarkisian, and our local YMCA.

If you would like to learn more about bone marrow donation or would like to add yourself to the registry (and are between the ages of 18-55, not active military, in good general health, and over 105 pounds) please join us on Saturday 12pm-3pm at the YMCA in Maplewood.

Love, Jess

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Please keep in mind we are looking for people to register that are committed to donating if called. Otherwise there is false hope and wasted time for patients. Thank you!!!!!!