“Everything we do is designed to equip, orient and quietly protect parents from things that can make a very difficult thing more difficult.”
In the final episode of Rare Diseases, Real Stories, two Massachusetts mothers who lost their children to rare diseases share how they turned their grief into purpose.
Blyth Taylor Lord started Courageous Parents Network 13 years after her daughter, Cameron, died from Tay-Sachs disease. Jennifer Siedman lost her son, Ben, to Sanfilippo syndrome just shy of his 18th birthday. Together, Lord and Siedman launched the network to empower and support parents whose children are diagnosed with rare diseases and other serious illnesses.
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Transcript – Courageous Parents Network
This transcript was created using speech recognition software. While it has been reviewed by the Office of Communications, it may contain errors.
[MUSIC]
Host Jennifer Berryman
Rare 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 mother
It was a journey that ended with the result we never saw coming.
Jennifer Berryman
It’s about the transformational power families wield in moving rare diseases research forward.
Lee Greenwood, Noa’s father
It’s a community that relies on each other.
Jennifer Berryman
Each 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 father
Gene therapy—it provides hope.
Jennifer Berryman
Hope AND Love.
Lori Greenwood, Noa’s mother
I’m going to tickle you.
[SOUND OF LITTLE GIRL GIGGLING]
Lee Greenwood
There is something about Noa that sparkles. It’s infectious.
Jennifer Berryman
Each family battles bravely on the front lines when every moment counts.
Lori Greenwood
She is doing things that we never expected her to do.
Jennifer Berryman
I’m Jennifer Berryman. I’ll be your host.
This is a production of UMass Chan Medical School.
[MUSIC]
Jennifer Berryman
Woven through the stories of all the families who have shared their stories with us is a seeking, a fighting, an action of some kind that follows their child’s diagnosis. Fundraising, maybe? Finding researchers. Doing something to help manage the child’s illness along with the heartache, grief and guilt that can emerge after a rare genetic disease is diagnosed.
With scientific advances, many parents immediately and urgently seek new treatments like gene therapy. But for some families, not only is that just not possible, it is not their goal.
The gut reaction would be, yes, I want it. I want that opportunity. I want that bite at the apple.
Blyth Taylor Lord, founder of the Courageous Parents Network
I have a complicated answer to that, because all parents would do anything for the well-being of their child, including saving their child. When in 1999 a diagnosis of infantile Tay Sachs was 100 percent a death sentence, and there was nothing my husband and I could do. We could have raised $100 million, and it still would not have saved our children in the two years from diagnosis until they died. We were able to pivot, within a month of diagnosis, that this was purely a palliative care play, and there was liberation in that. What we hoped for was something different. We hope for the best quality of life for as long as possible.
Jennifer Berryman
Lord and Jennifer Siedman sat with us around a kitchen table in Newton on a sunny November morning as we sipped hot water and snacked on nuts and clementines. Blyth Taylor Lord is the founder of the Courageous Parents Network.
Blyth Taylor Lord
I came to this work because my second daughter, Cameron, was diagnosed with infantile Tay Sachs in 1999, two weeks, or about two to four weeks, after her first cousin was diagnosed with infantile Tay Sachs. He was 18 months. The fathers of these two children are identical twins and it was for that reason that we caught it early with Cameron. Hayden was a year older than our daughter, Cameron, and we were able to learn from him about what helped and didn’t help.
Jennifer Berryman
Blyth Taylor Lord is the founder of the Courageous Parents Network
Blyth Taylor Lord said their pediatrician was key, helping them manage the expected symptoms of Tay-Sachs, which include weakness and stiffness, startling easily, missing developmental milestones, seizures and often, pneumonia that claims children’s lives between ages three and five. Rare at the time, their family’s pediatrician knew about and fully supported their desire for palliative medicine.
Blyth Taylor Lord
He had goals of care conversations with us about what we wanted for Cameron’s life, and he understood that we didn’t want to have a feeding tube to extend her life because of what we felt her quality of life would be at the time that she could no longer feed orally safely. He was willing to, you know, be her doctor without a feeding tube, and recognized that that would shorten the length of her life. And then, when she had her last pneumonia, he was willing to not treat it and to transition to comfort care only. And this contrasted with what happened to [my] nephew Hayden, who had a very well-intended pediatrician, but who had no palliative care training or mindset, did not have goals of care conversations with my brother and sister-in-law and did not know how to keep Hayden comfortable at end of life. That made Hayden’s end of life more complicated for the parents. Hayden died five months before Cameron. We learned from that what we wanted and didn’t want for Cameron and our primary care pediatrician helped make that possible.
[MUSIC]
Jennifer Siedman, director of community engagement, Courageous Parents Network
I am Jennifer Siedman, and I am currently the director of community engagement at Courageous Parents Network, but I came to Courageous Parents Network first as a parent.
Jennifer Berryman
In 1996, Siedman’s middle son, Benjamin, who was 15 months old at the time, was diagnosed with Sanfilippo Syndrome.
Jennifer Siedman
It was quite by accident. He had a febrile seizure, which led to a CT scan. They saw the breakdown in his brain, the storage in his brain, and we got a diagnosis. So, like Blyth, I didn’t have this attenuated diagnostic journey that many families experience, and we were cast into that world of you know, what do we do next? And what do we do now?
[MUSIC]
Jennifer Berryman
At the time, the average child with Sanfilippo lived to be about 15 years old.
Jennifer Siedman
My husband and I looked at his early diagnosis as an opportunity. As devastated as we were, we saw it as a vehicle to put in place many of the therapies that he would need to be proactive about, getting him to speak or communicate the best that he could, maintain his physical abilities and all the things that we knew were going to disappear as a result of his disorder.
Jennifer Berryman
Simultaneously, the Siedmans, who were both working full time and raising three children, began raising funds for research.
Jennifer Siedman
About two years before [Ben] died, maybe three, the researcher that we had primarily been working with called us and she had had a breakthrough. The first things out of her mouth were, “I have mice,” and I knew what she meant. She meant, “I have mice and they’re living.“ And so we dug back in and actually led the charge of uniting 15 foundations worldwide to invest in this research. Subsequently it was licensed by a company and about a year after my son passed away, that research actually went to gene therapy, the research actually went into a clinical trial.
Jennifer Berryman
For San Filippo?
Jennifer Siedman
For San Filippo.
Jennifer Berryman
I don’t really know how to ask the question, but that seems like the culmination of all your hard work and cruel at the same time that Benjamin didn’t have an opportunity to . . .
Jennifer Siedman
You know, about the time that Ben was six . . . you know, I had this recognition that I had likely watched half of his life go by, and I also started to realize that the science wasn’t going to get there quick enough for Ben. We were, as I said, not, we don’t come at this from a medical background, but we had a lot of, we spent a lot of time investing, and we had a lot of good people around us helping us learn the science, and we started to understand that it wasn’t going to get there in time.
[MUSIC]
Jennifer Siedman
So, we had already sort of had this epiphany, for lack of a better word, this was not going to be something that Ben could participate in, that he was too far along. We also, at that point, had honed our own palliative voice inside of ourselves, because we hadn’t really had any experience with palliative care to say, even if we could participate in a gene therapy and it would arrest Benjamin’s state where he is, would we want that for him? And we didn’t want that for him . . . he was too far declined at that point, you know, he was not mobile by 14, he had lost most of his language. We weren’t interested in letting him be that child. They still maintained the hope, but understood that Ben probably wasn’t going to benefit from the work that they also were doing, because it was a full-on family affair.
Jennifer Berryman
Jennifer Siedman said the decisions they made about Ben were not always met with positivity, which made what could be an isolating situation even more so.
Jennifer Siedman
I feel thankful that Stuart [her husband] and I had the long view, because I see too many families who can’t separate the difference between hope and expectation and the emotional baggage that that carries.
Jennifer Berryman
Say more about that, what do you mean?
Jennifer Siedman
I could keep my hope for Benjamin, and our family, and not have the expectation that he was going to participate in a trial. And that is what made it okay that a year later another child did, and I wrote her a letter. ”Eliza”—her name happened to be Eliza—”you are my child. You are my Ben.”
Jennifer Berryman
I’m fighting for you now.
Jennifer Siedman
Yeah.
Jennifer Berryman
What the Courageous Parents Network aims to channel is the lived experience of parents who have been there to empower, equip and orient them to their new reality after a diagnosis. To promote the value of palliative care, grief counseling and to help other parents understand something called anticipatory grief.
[MUSIC]
Jennifer Berryman
In short—they try to minimize regret and maximize healing during an overwhelming time.
Blyth Taylor Lord
The unspoken byline or tagline is protecting parents while they’re going through this. Everything we do is designed to equip, orient and quietly protect parents from things that can make a very difficult thing more difficult. That’s one of the reasons why Jennifer and I agreed together that Courageous Parents Network would develop this educational unit, psycho education unit, for families to educate, to help them understand clinical trials and the clinical trial process so that it could be used by families on their own or clinicians with families.
Jennifer Siedman
Or study coordinators. People that I present to are clinical operations teams at biotech companies so that they better understand the family experience.
Jennifer Berryman
I’m just thinking like from the perspective of a parent like both of you, you know, you, you’re fighting, fighting, fighting. You’re raising money. You’re trying to advance the science to make sure that there are treatment options. And yet, what I think I feel you saying is that while we still want that, it’s not the answer for everybody.
Blyth Taylor Lord
Of course. Treatments and cures are the ultimate goal, but that is future focused. Bringing a viable intervention takes decades. So, what are we also doing for families and children in the here and now? It’s not either or. It’s an and.
Jennifer Siedman
Yeah, and the real reality is research leaves the majority of the people behind, and so we have to pay attention to that majority and what their needs are.
Jennifer Berryman
What would it have meant to you to have had [Courageous Parents Network] available to you at that time?
Jennifer Siedman
I didn’t understand the term anticipatory grief until I came to work at Courageous Parents Network. That was, you know, some 16-17 years after my son’s diagnosis. Knowing the name of the type of grief I was feeling would have empowered me to be more successful at getting over it, or you don’t get over it, but coping with it. I think our focus on decision making—because you’re making a lot of decisions as you’re caring for a medically complex child, more than you even recognize—would probably have helped me quite a bit in my process. Remember, Ben was diagnosed before the internet, there wasn’t Facebook, there weren’t these connections. In some ways, I’m very grateful for that, and in other ways, it was extremely isolating. So, an educational place to go, where I could learn and listen without having to respond, probably would have been great.
Blyth Taylor Lord
Jennifer has said that, you know, for parents anticipating a healthy pregnancy, there it’s the book What to Expect When You’re Expecting, and there is no what to expect when your you learn your child has a rare or life-threatening disorder. And that’s what Courageous Parents Network strives to be a version of. What we strive to do at Courageous Parents Network is show parents that there are no wrong answers and give parents permission to say yes and give parents permission to say no. [To show] that you could make a different decision and that doesn’t mean you’re any less of a loving parent. I think that’s one of the things I want, we want, Courageous Parents Network to be, so that no parent feels that they are being judged or that there’s a right or wrong way other than their way, because you know your child best and your family best.”
Jennifer Berryman
The latest resource Courageous Parents Network has added is called neuro journey, designed for families whose child has severe neurological impairment.
What do you get from now having created this network and being a resource for other families around the world?
Jennifer Siedman
Well, I get to look at Ben every day because I get to see him in the other families that I interact with. I get to see him in the materials that I’m developing, the presentations I’m giving the families that are asking for support, and the types of support they’re getting. So, every day, I get to see my child. And so, what better thing could you get than that?
[MUSIC]
Jennifer Berryman
We’d like to thank Blyth and Jennifer for sharing their stories and for providing a resource for other families. Visit courageousparentsnetwork.org to learn more. And we will provide a link in our show notes.
Rare Disease, 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 the episode.
Dan Lambert and Samuella Akaab designed our graphics.
Joanna Alizio and Rey Gonzalez designed our webpage.
It’s also produced and hosted by me, Jennifer Berryman.
We extend our most sincere gratitude to all the families who shared their stories.
If you found this series worthwhile, we hope you’ll let your friends know about it and share it on social media or visit umassmed.edu/rarediseasesrealstories.
You can also email us anytime at advancingtogether@umassmed.edu.
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