February 10, 2025 • 17 mins
Seven-year-old Jack Laidlaw, the oldest of three boys, is upbeat and friendly to everyone he meets, according to his parents, Anna and Richard Laidlaw. But Jack faces challenges due to a rare disorder he cannot yet comprehend. His parents are determined to remain hopeful and create a better future for him despite his diagnosis of hereditary spastic paraplegia type 4 (SPG4).
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
[MUSIC]
(00:01):
Host Jennifer BerrymanRare Diseases, Real Stories is a special podcast series
It is about children living with rare diseases and their parents.
Blyth Taylor Lord, The Courageous Parents Network In 1999, a diagnosis of infantile Tay Sachs was 100 percent a death sentence
Jo Kaur, Riaan Research Initiative, Riaan’s motherIt was a journey that ended with the result we never saw coming.
Jennifer BerrymanIt’s about the transformational power families wield in moving rare diseases research forward.
Lee Greenwood, Noa’s fatherIt’s a community that relies on each other.
Jennifer BerrymanEach episode is about courage, perseverance.
Linda Pham, Raiden Science Foundation, Raiden’s mother As parents, we are going to fight with him till the end.
Tommy Pham, Raiden Science Foundation, Raiden’s fatherGene therapy—it provides hope.
Jennifer BerrymanHope AND Love.
Lori Greenwood, Noa’s mother I’m going to tickle you.
[GIGGLING]
Lee GreenwoodThere is something about Noa that sparkles. It’s infectious.
Jennifer BerrymanEach family battles bravely on the front lines when every moment counts.
Lori GreenwoodShe is doing things that we never expected her to do.
Jennifer BerrymanI’m Jennifer Berryman. I’ll be your host.
This is a production of UMass Chan Medical School.
Anna Laidlaw, Jack’s motherMy name is Anna Laidlaw.
Richard Laidlaw, Jack’s fatherI’m Richard Laidlaw,
Anna Laidlaw We live in Ottawa, and Jack is a big brother to two little brothers, Scott and Tom.
We’re so blessed to have three wonderful boys. They’re all just absolutely precious.
(00:22):
Jennifer BerrymanAnna, Richard and their oldest son, 7-year-old Jack, sat down with our producer, Sarah Willey, after a long day of traveling from their home in Canada to Boston. Jack smiled shyly and fidgeted with the microphone cord. His parents were sitting on each side of him tightly squeezing his hands.
Sarah Willey, director of media relations at UMass ChanJack, you want to tell me a little bit about yourself?
Jack Laidlaw Yeah, my name is Jack, and I play hockey.
Sarah WilleyDo you play any other sports other than hockey?
Jack Laidlaw Baseball. Swimming. Piano.
Jennifer BerrymanWhen we started to ask the Laidlaw’s what brought them to Boston Children’s Hospital with Jack, his parents exchanged glances and paused. It was a small but poignant moment that underscored the emotional toll their story has taken.
Anna Laidlaw I can speak more freely if he’s just sitting outside the room. Jack, do you want to play some games?
Jack LaidlawOK.
Anna Laidlaw If you get it for me, I can unlock it and you can pick any game you want.
Jennifer BerrymanKeeping their eyes on Jack through the door as he played a game on Anna’s phone, she and Richard took a deep breath and began to explain what has transpired since Jack was diagnosed with a rare genetic disease just before Christmas in 2023.
Anna Laidlaw We do notice progression in his legs when he’s walking. We noticed that his legs are pointed inwards. And he’s tripping more, and you can just tell there’s progression. So, it gets hard.
Darius Ebrahimi-Fakhari, MD, PhD, pediatric neurologist at Boston Children’s HospitalJack has hereditary spastic paraplegia, type four, SPG4. He presents with some of the very typical symptoms. So, he has difficulties with walking. He has some mild stiffness in his legs, so spasticity.
Jennifer BerrymanThat’s pediatric neurologist and neuroscientist doctor Darius Ebrahimi-Fakhari of Boston Children’s Hospital and Harvard Medical School.
[AUDIO FROM JACK’S ASSESSMENT WITH DR. EBRAHIMI-FAKHARI IN BOSTON]
Jennifer BerrymanDr. Ebrahimi-Fakhari is the director of the movement disorder program and the hereditary spastic paraplegia research program.
Darius Ebrahimi-Fakhari, MD, PhD Hereditary spastic paraplegia is a rare disease. It’s actually a group of 80 different diseases, as we understand now. It’s a neurological disease that affects both children and adults and presents with one key symptom, which is stiffness or spasticity of the legs and weakness of the legs. SPG4, the gene is actually called a SPAST gene. SPAST accounts for about 50 percent of all cases,
Sarah WilleyWhat is the outcome for patients with this type of condition? How progressive is it?
Darius Ebrahimi-Fakhari, MD, PhDIt’s a great question, and certainly a question that is always on the mind of families when they meet. And I’d say it’s very hard to describe that, because we don’t have a lot of data on disease progression.
Richard LaidlawHe’s had issues in some of the sports too, with, with things he’s doing too. So, there’s fumbling, asking why his legs are doing things that he used to be able to do. It’s happening.
Jennifer BerrymanThe toes pointing inward is an early sign of spasticity that began when Jack was two. The pediatrician said he would grow out of it, but he didn’t. Physical therapy didn’t help. Genetic testing confirmed SPG4. With this condition, it will eventually progress into paralysis.
Anna Laidlaw His legs might not work one day.
(00:43):
Jennifer BerrymanJack’s parents are determined to fight for a better outcome.
Anna Laidlaw Jack got diagnosed right before Christmas, and we just were trying to process it. I was not ready to look it up yet. We were trying to keep just everything happy for the kids during the day and at Christmas time. At night, we’d just, you know, be together and grieve this diagnosis. But in the new year, I realized I had to, I didn’t even know the disease my son had. I had never heard of it before, so I had to research it.
Jennifer BerrymanBefore the Laidlaws went public with Jack’s diagnosis, they searched online for information about SPG4, for support groups, for the right specialists—like Dr. Ebrahimi-Fakhari—who was doing research into SPG4.
Anna LaidlawSome wrote back, no, that’s not me. And then one person wrote back, you know, no, I can’t help you, but I think it’s this person.
Jennifer BerrymanThey realized there were people who had already been rallying to raise money in hopes of finding a cure for SPG4.
Richard Laidlaw We started meeting, meeting these other foundations, and chatting with them, and just kind of kept progressing to where we are now.
Anna Laidlaw We are feeling so lucky that when we went to research what this disease was, and we saw, you know, there is a cure being developed, and we contacted that foundation that started it, the Cure SPG4 Foundation, they initiated this research. We’re the only ones in Canada raising money for the SPG4 cure, and then we’re working along with Cure SPG4 Foundation and the Lillian Blair Foundation. So, we know that we are coordinating funding together.
Jennifer BerrymanThe Laidlaws have also partnered with the Blu Genes Foundation to raise money to support gene therapy research at UMass Chan Medical School. Research is being led by Drs. Miguel Sena-Estevez and Heather Gray-Edwards. Dr. Gray-Edwards is co-director of the Translational Institute for Molecular Therapeutics at UMass Chan.
Heather Gray-Edwards, DVM, PhD, assistant professor of radiology and co-director of the Translational Institute for Molecular Therapeutics at UMass ChanI can tell you that there has been, like a shift, it feels like, from it being us helping researchers to us helping directly families. I feel like parents are driving the conversation, and they’re involved in putting the pieces together and trying to facilitate the research.
Jennifer BerrymanThrough the inspiring efforts of parents like Anna and Richard, and others we’ve highlighted in the Rare Diseases, Real Stories podcast series, the field of rare disease research is being transformed—an impact Dr. Ebrahimi-Fakhari recognizes as vital.
Darius Ebrahimi-Fakhari, MD, PhDThe question is, can we develop a therapy for SPG4 that not only treats the symptoms but stops disease progression? So, what we call a disease modifying therapy, and the situation for SPG4 is tricky. The gene has been discovered, want to say over 20 years ago, but despite that, our understanding of what happens when the gene is mutated still remains somewhat limited. We and others have thought about the best strategies to tackle the problem of SBG4 and what Heather and Miguel have proposed is a type of gene therapy that gets around a lot of the problems that currently exist with understanding SPG4 and devising treatments. No progress is made without collaboration in rare diseases. This starts, of course, with the patient and their families and foundations that form around the rare disease. Patients, families and advocates are really galvanizing a network of scientists and clinicians to work on their rare disease, and I think that is the contribution that is wonderful to see and is absolutely crucial.
Jennifer BerrymanAnna and Richard Laidlaw are focused on two goals (00:54):
bringing attention to SPG4 and raising money to support groundbreaking research.
Richard Laidlaw Our path was, we needed 3 million US dollars to cure Jack. So the only way we could do this was to go public.
Jennifer BerrymanThe family has found moments of joy through their fundraising efforts. Sharing their story publicly has brought unexpected opportunities like riding the Zamboni at the Ottawa Senators hockey game—a big deal for a family with three boys who love hockey.
[AUDIO FROM TV SEGMENT ON JACK]
Jennifer BerrymanGetting a chance to see global superstar Taylor Swift on stage for one of the final shows of the Eras tour was a huge hit.
[AUDIO FROM TV SEGMENT ON JACK]
Jennifer BerrymanYet at the same time, It’s Jack’s parents who shoulder the burden day in and day out to protect him.
Richard Laidlaw He knows he has a silly gene, and it’s making his legs tired, but yeah, through all these interviews, he’s hearing more and learning more
Anna Laidlaw We don’t talk about the progression, though. I don’t think that’s something a seven-year-old needs to know and carry on his shoulders, you know.
Jennifer BerrymanWhile they push forward with fundraising, they continue to draw unwavering strength and support from their incredible community around them.
Anna Laidlaw It’s a hard journey.
Richard LaidlawSome days, you look at the big picture. And it’s a big mountain to climb, but we’re not stopping.
Anna Laidlaw We keep telling our story over and over, no matter how hard it is, because we know we need to raise this money so that a cure can be developed. And this is our hope, and we will do anything to get this cure for Jack.
[MUSIC]
Jennifer BerrymanWe’d like to thank Anna, Richard and Jack Laidlaw for meeting us in Boston to share their story publicly again.
Also, we appreciate Dr. Ebrahimi-Fakhari for providing more information on hereditary spastic paraplegia and his ongoing effort to drive research forward.
And to the UMass Chan Medical School team, including Heather Gray-Edwards, for taking time to speak with us about the rare diseases research happening on our campus.
If you’re interested in learning about SPG4 research, we will have links in our show notes and on our website at umassmed.edu/rarediseasesrealstories.
In our next episode of Rare Diseases Real Stories, you will get to know two women who are empowering parents and others caring for children with serious diseases.
Jennifer BerrymanWhat do you get from now having created this network and being a resource for other families around the world?
Jennifer Siedman, Courageous Parents NetworkWell, I get to look at Ben every day because I get to see him in the other families that I interact with.
(01:15):
Jennifer BerrymanFind out how the Courageous Parents Network might help you.
Rare Diseases, Real Stories is a production of the Office of Communications at UMass Chan Medical School. It was conceived of and produced by Sarah Willey.
Bryan Goodchild produced, photographed and edited this episode.
Dan Lambert and Samuella Akaab designed our graphics.
Joanna Alizio and Rey Gonzalez developed the webpage.
It’s also produced and hosted by me, Jennifer Berryman.
[MUSIC]
If you find this series worthwhile, we hope you’ll share it on social media or tell a friend to visit (01:22):
umassmed.edu/rarediseasesrealstories.Email us anytime
[MUSIC]
(00:01):
Host Jennifer BerrymanRare Diseases, Real Stories is a special podcast series
It is about children living with rare diseases and their parents.
Blyth Taylor Lord, The Courageous Parents Network In 1999, a diagnosis of infantile Tay Sachs was 100 percent a death sentence
Jo Kaur, Riaan Research Initiative, Riaan’s motherIt was a journey that ended with the result we never saw coming.
Jennifer BerrymanIt’s about the transformational power families wield in moving rare diseases research forward.
Lee Greenwood, Noa’s fatherIt’s a community that relies on each other.
Jennifer BerrymanEach episode is about courage, perseverance.
Linda Pham, Raiden Science Foundation, Raiden’s mother As parents, we are going to fight with him till the end.
Tommy Pham, Raiden Science Foundation, Raiden’s fatherGene therapy—it provides hope.
Jennifer BerrymanHope AND Love.
Lori Greenwood, Noa’s mother I’m going to tickle you.
[GIGGLING]
Lee GreenwoodThere is something about Noa that sparkles. It’s infectious.
Jennifer BerrymanEach family battles bravely on the front lines when every moment counts.
Lori GreenwoodShe is doing things that we never expected her to do.
Jennifer BerrymanI’m Jennifer Berryman. I’ll be your host.
This is a production of UMass Chan Medical School.
Anna Laidlaw, Jack’s motherMy name is Anna Laidlaw.
Richard Laidlaw, Jack’s fatherI’m Richard Laidlaw,
Anna Laidlaw We live in Ottawa, and Jack is a big brother to two little brothers, Scott and Tom.
We’re so blessed to have three wonderful boys. They’re all just absolutely precious.
(00:22):
Jennifer BerrymanAnna, Richard and their oldest son, 7-year-old Jack, sat down with our producer, Sarah Willey, after a long day of traveling from their home in Canada to Boston. Jack smiled shyly and fidgeted with the microphone cord. His parents were sitting on each side of him tightly squeezing his hands.
Sarah Willey, director of media relations at UMass ChanJack, you want to tell me a little bit about yourself?
Jack Laidlaw Yeah, my name is Jack, and I play hockey.
Sarah WilleyDo you play any other sports other than hockey?
Jack Laidlaw Baseball. Swimming. Piano.
Jennifer BerrymanWhen we started to ask the Laidlaw’s what brought them to Boston Children’s Hospital with Jack, his parents exchanged glances and paused. It was a small but poignant moment that underscored the emotional toll their story has taken.
Anna Laidlaw I can speak more freely if he’s just sitting outside the room. Jack, do you want to play some games?
Jack LaidlawOK.
Anna Laidlaw If you get it for me, I can unlock it and you can pick any game you want.
Jennifer BerrymanKeeping their eyes on Jack through the door as he played a game on Anna’s phone, she and Richard took a deep breath and began to explain what has transpired since Jack was diagnosed with a rare genetic disease just before Christmas in 2023.
Anna Laidlaw We do notice progression in his legs when he’s walking. We noticed that his legs are pointed inwards. And he’s tripping more, and you can just tell there’s progression. So, it gets hard.
Darius Ebrahimi-Fakhari, MD, PhD, pediatric neurologist at Boston Children’s HospitalJack has hereditary spastic paraplegia, type four, SPG4. He presents with some of the very typical symptoms. So, he has difficulties with walking. He has some mild stiffness in his legs, so spasticity.
Jennifer BerrymanThat’s pediatric neurologist and neuroscientist doctor Darius Ebrahimi-Fakhari of Boston Children’s Hospital and Harvard Medical School.
[AUDIO FROM JACK’S ASSESSMENT WITH DR. EBRAHIMI-FAKHARI IN BOSTON]
Jennifer BerrymanDr. Ebrahimi-Fakhari is the director of the movement disorder program and the hereditary spastic paraplegia research program.
Darius Ebrahimi-Fakhari, MD, PhD Hereditary spastic paraplegia is a rare disease. It’s actually a group of 80 different diseases, as we understand now. It’s a neurological disease that affects both children and adults and presents with one key symptom, which is stiffness or spasticity of the legs and weakness of the legs. SPG4, the gene is actually called a SPAST gene. SPAST accounts for about 50 percent of all cases,
Sarah WilleyWhat is the outcome for patients with this type of condition? How progressive is it?
Darius Ebrahimi-Fakhari, MD, PhDIt’s a great question, and certainly a question that is always on the mind of families when they meet. And I’d say it’s very hard to describe that, because we don’t have a lot of data on disease progression.
Richard LaidlawHe’s had issues in some of the sports too, with, with things he’s doing too. So, there’s fumbling, asking why his legs are doing things that he used to be able to do. It’s happening.
Jennifer BerrymanThe toes pointing inward is an early sign of spasticity that began when Jack was two. The pediatrician said he would grow out of it, but he didn’t. Physical therapy didn’t help. Genetic testing confirmed SPG4. With this condition, it will eventually progress into paralysis.
Anna Laidlaw His legs might not work one day.
(00:43):
Jennifer BerrymanJack’s parents are determined to fight for a better outcome.
Anna Laidlaw Jack got diagnosed right before Christmas, and we just were trying to process it. I was not ready to look it up yet. We were trying to keep just everything happy for the kids during the day and at Christmas time. At night, we’d just, you know, be together and grieve this diagnosis. But in the new year, I realized I had to, I didn’t even know the disease my son had. I had never heard of it before, so I had to research it.
Jennifer BerrymanBefore the Laidlaws went public with Jack’s diagnosis, they searched online for information about SPG4, for support groups, for the right specialists—like Dr. Ebrahimi-Fakhari—who was doing research into SPG4.
Anna LaidlawSome wrote back, no, that’s not me. And then one person wrote back, you know, no, I can’t help you, but I think it’s this person.
Jennifer BerrymanThey realized there were people who had already been rallying to raise money in hopes of finding a cure for SPG4.
Richard Laidlaw We started meeting, meeting these other foundations, and chatting with them, and just kind of kept progressing to where we are now.
Anna Laidlaw We are feeling so lucky that when we went to research what this disease was, and we saw, you know, there is a cure being developed, and we contacted that foundation that started it, the Cure SPG4 Foundation, they initiated this research. We’re the only ones in Canada raising money for the SPG4 cure, and then we’re working along with Cure SPG4 Foundation and the Lillian Blair Foundation. So, we know that we are coordinating funding together.
Jennifer BerrymanThe Laidlaws have also partnered with the Blu Genes Foundation to raise money to support gene therapy research at UMass Chan Medical School. Research is being led by Drs. Miguel Sena-Estevez and Heather Gray-Edwards. Dr. Gray-Edwards is co-director of the Translational Institute for Molecular Therapeutics at UMass Chan.
Heather Gray-Edwards, DVM, PhD, assistant professor of radiology and co-director of the Translational Institute for Molecular Therapeutics at UMass ChanI can tell you that there has been, like a shift, it feels like, from it being us helping researchers to us helping directly families. I feel like parents are driving the conversation, and they’re involved in putting the pieces together and trying to facilitate the research.
Jennifer BerrymanThrough the inspiring efforts of parents like Anna and Richard, and others we’ve highlighted in the Rare Diseases, Real Stories podcast series, the field of rare disease research is being transformed—an impact Dr. Ebrahimi-Fakhari recognizes as vital.
Darius Ebrahimi-Fakhari, MD, PhDThe question is, can we develop a therapy for SPG4 that not only treats the symptoms but stops disease progression? So, what we call a disease modifying therapy, and the situation for SPG4 is tricky. The gene has been discovered, want to say over 20 years ago, but despite that, our understanding of what happens when the gene is mutated still remains somewhat limited. We and others have thought about the best strategies to tackle the problem of SBG4 and what Heather and Miguel have proposed is a type of gene therapy that gets around a lot of the problems that currently exist with understanding SPG4 and devising treatments. No progress is made without collaboration in rare diseases. This starts, of course, with the patient and their families and foundations that form around the rare disease. Patients, families and advocates are really galvanizing a network of scientists and clinicians to work on their rare disease, and I think that is the contribution that is wonderful to see and is absolutely crucial.
Jennifer BerrymanAnna and Richard Laidlaw are focused on two goals (00:54):
bringing attention to SPG4 and raising money to support groundbreaking research.
Richard Laidlaw Our path was, we needed 3 million US dollars to cure Jack. So the only way we could do this was to go public.
Jennifer BerrymanThe family has found moments of joy through their fundraising efforts. Sharing their story publicly has brought unexpected opportunities like riding the Zamboni at the Ottawa Senators hockey game—a big deal for a family with three boys who love hockey.
[AUDIO FROM TV SEGMENT ON JACK]
Jennifer BerrymanGetting a chance to see global superstar Taylor Swift on stage for one of the final shows of the Eras tour was a huge hit.
[AUDIO FROM TV SEGMENT ON JACK]
Jennifer BerrymanYet at the same time, It’s Jack’s parents who shoulder the burden day in and day out to protect him.
Richard Laidlaw He knows he has a silly gene, and it’s making his legs tired, but yeah, through all these interviews, he’s hearing more and learning more
Anna Laidlaw We don’t talk about the progression, though. I don’t think that’s something a seven-year-old needs to know and carry on his shoulders, you know.
Jennifer BerrymanWhile they push forward with fundraising, they continue to draw unwavering strength and support from their incredible community around them.
Anna Laidlaw It’s a hard journey.
Richard LaidlawSome days, you look at the big picture. And it’s a big mountain to climb, but we’re not stopping.
Anna Laidlaw We keep telling our story over and over, no matter how hard it is, because we know we need to raise this money so that a cure can be developed. And this is our hope, and we will do anything to get this cure for Jack.
[MUSIC]
Jennifer BerrymanWe’d like to thank Anna, Richard and Jack Laidlaw for meeting us in Boston to share their story publicly again.
Also, we appreciate Dr. Ebrahimi-Fakhari for providing more information on hereditary spastic paraplegia and his ongoing effort to drive research forward.
And to the UMass Chan Medical School team, including Heather Gray-Edwards, for taking time to speak with us about the rare diseases research happening on our campus.
If you’re interested in learning about SPG4 research, we will have links in our show notes and on our website at umassmed.edu/rarediseasesrealstories.
In our next episode of Rare Diseases Real Stories, you will get to know two women who are empowering parents and others caring for children with serious diseases.
Jennifer BerrymanWhat do you get from now having created this network and being a resource for other families around the world?
Jennifer Siedman, Courageous Parents NetworkWell, I get to look at Ben every day because I get to see him in the other families that I interact with.
(01:15):
Jennifer BerrymanFind out how the Courageous Parents Network might help you.
Rare Diseases, Real Stories is a production of the Office of Communications at UMass Chan Medical School. It was conceived of and produced by Sarah Willey.
Bryan Goodchild produced, photographed and edited this episode.
Dan Lambert and Samuella Akaab designed our graphics.
Joanna Alizio and Rey Gonzalez developed the webpage.
It’s also produced and hosted by me, Jennifer Berryman.
[MUSIC]
If you find this series worthwhile, we hope you’ll share it on social media or tell a friend to visit (01:22):
umassmed.edu/rarediseasesrealstories.Email us anytime
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