Krabbe Disease with Kasey Feldt

[00:00:00] I'm Effie Parks Welcome to Once Upon A Gene, a podcast. This is a place I created for

[00:00:09] us to connect and share the stories of our not so typical lives. Raising kids who are

[00:00:15] born with rare genetics and drones and other types of disabilities can feel pretty isolating.

[00:00:20] What I know for sure is that when we can hear the triumphs and challenges from others who get it,

[00:00:26] we can find a lot more laughter, a lot more hope and feel a lot less alone. I believe there are

[00:00:32] some magical healing powers that can happen for all of us through sharing our stories

[00:00:37] and I'll take all the help I can get.

[00:00:43] Once Upon A Gene is proud to be part of bloodstream media, living in a family affected by rare

[00:00:49] and chronic illness can be isolating and sometimes the best medicine is connecting to the voices

[00:00:54] of people who share your experience. This is why bloodstream media produces podcast blogs and

[00:01:00] other forms of content for patients, families and clinicians impacted by rare and chronic diseases.

[00:01:06] Visit bloodstreammedia.com to learn more. Hi friends, welcome to the show. This is Once Upon A Gene

[00:01:11] and I'm your host Effie Parks. I'm so grateful that you're here. If you're new, welcome please send

[00:01:17] me a message if there's anything I can do to help support you or direct you to a specific episode.

[00:01:22] If you're looking for something in particular to be on the show, send me a message and we'll make

[00:01:26] it happen. For all my OGs around here, thank you so much for continuing to support this show. It

[00:01:31] means so much to me and I love being a part of helping to inform and empower and connect with

[00:01:38] families like ours. So let's keep it up. I can't believe it's already spring. Slow down, slow down.

[00:01:45] Okay, I hope I see some of you at World Orphan Drug coming up in Boston, Massachusetts.

[00:01:52] On April 23rd through the 25th, I'm going to be speaking on a panel with my friends over at

[00:01:57] Gen. DX to talk about the importance of genetic testing. Of course, there's also going to be some

[00:02:02] super other fun stuff beyond the diagnosis is going to be there. Ford's portrait is going to be

[00:02:08] there. I get to see it in person for real. I'm going to cry and I'm sure there might be a secret

[00:02:13] on the feeling of a new little kiddo too. So I hope you can come if you're near Boston. Definitely show

[00:02:19] up. Advocates have free admission so make it happen if you can, okay? It'd be good to see some

[00:02:24] new faces and some friendly old ones of course. So today's conversation I have a very special advocate.

[00:02:32] I would say that she's sort of fresh and new but her journey has probably felt a lot longer than

[00:02:39] that and a lot more arduous than most. Her son Dawson was born into the world with a disorder called

[00:02:46] Crab A disease, some of which you probably know and she has become just a super motivated and

[00:02:54] passionate advocate. And I'm really excited to just watch her journey and see where this fuel takes

[00:03:01] her. I think she's going to be pretty unstoppable. She's not only advocating for Crab A but she's

[00:03:07] on a path to really help change the newborn screening system so these kids have a chance at

[00:03:13] early detection to completely change the outcome for these children who have this diagnosis.

[00:03:19] And I'm really excited for you to hear from her and learn from her and maybe be inspired for her

[00:03:24] and definitely send her a message of support if you can. She's very special and I'm super

[00:03:30] excited to have her on the show. Have a little conversation with her and introduce her to you.

[00:03:34] So please welcome my guest, Casey Feld. Hi Casey, welcome to the podcast.

[00:03:40] Hi F A. Thanks for having me. Yep, I'm really looking forward to chatting with you and helping

[00:03:45] to spread your story about Dawson and Crab A and newborn screening and all the things

[00:03:49] and I know you're doing a little work helping out library and you're also working with another

[00:03:54] foundation, your busy busy gal. So thanks for taking the time to talk to me. Could you do me a favor

[00:03:59] and give us a little introduction? Yeah, I'm Casey and I got into the rare disease space when my son Dawson

[00:04:07] was diagnosed with Crab A disease. He was born a perfectly healthy baby boy and been around like

[00:04:15] three to four months. My husband and I noticed symptoms such as lack of head control

[00:04:21] and feeding difficulties and just irritability. So long story short, we started doing all the testing

[00:04:30] in about six months. We got the diagnosis of Crab A disease and Crab A is a always terminal diagnosis.

[00:04:38] So we made him comfortable for about around eight months and he passed away at 15 months.

[00:04:45] So then I didn't know exactly where I wanted to go after he passed but something told me

[00:04:53] that I couldn't just let all this stuff, everything that we just went through happened and not

[00:05:00] take all that knowledge and all that pain and just let it go away. So I had to do something with

[00:05:06] that and I decided to start advocating for families with rare diseases, you know, look at

[00:05:12] industry families and that's kind of like why I'm here to share my story. I can only imagine that even

[00:05:18] blinking after losing your beautiful child is something that takes such guts. So especially with

[00:05:24] all that you're doing, it's really just remarkable Casey. So thank you for continuing and for

[00:05:29] advocating for other kids with Crab A. Thank you. As he was progressing I really didn't know

[00:05:36] how life was going to be after he passed like I didn't know if I was just going to lay in bed all day

[00:05:41] or have I would how life even looked after not taking care of my child. I'm used to being a mom

[00:05:49] and then it was so like it was just taken away but then I realized like I have to do something like

[00:05:56] this can't just keep happening people losing their children when there's newborn screening

[00:06:02] and we just have to spread awareness of this disease. So I've kind of made it my life goal, my admission.

[00:06:10] Could you share a little bit about Dawson with us? Sure he was my husband and I's first child

[00:06:17] and I can just tell you like a little bit about his personality and let's say his personality.

[00:06:23] He never spoke, we only got two laughs about it like from him but he had the biggest personality

[00:06:30] like he would roll his eyes when he was annoyed and but like he would do the biggest

[00:06:36] size when like you knew he was like okay I'm happy and he loved baby shark and

[00:06:45] Mickey Mouse Clubhouse and he just loved being like laying against your as my husband and I call it monkey

[00:06:52] and he was like the best co-wag. He's so beautiful. I'll make sure to add a photo of Dawson on

[00:06:59] carousel when we share this episode. He's so freaking cute. Okay well let's go back to that

[00:07:06] initial part where you started noticing three of super, super common symptoms that most of us

[00:07:11] face you know what the lack of the head control, the problems feeding and stuff like that.

[00:07:15] Did you have some initial challenges getting through the system and getting a diagnosis? It seems

[00:07:19] like you got a diagnosis fairly quickly so I'm imagining that these symptoms were perhaps very

[00:07:25] progressed. So like the head control was like the big thing that was like a red flag like

[00:07:31] especially with our pediatrician and then as like for the feeding it just seemed like it took

[00:07:37] longer for him to eat before it would take you know usually 30 minutes to give a baby like an 8-ounce

[00:07:44] bottle, it would take us 40 minutes just to get like four ounces in them and it just got progressively

[00:07:50] worse and then it got to the point where he would throw it all up after you were gave all that

[00:07:56] time to feed him, he threw it all up and we later found out he was aspirating on that food because

[00:08:02] he was having trouble swallowing. And then so as we started as our neurologist started testing

[00:08:08] he got an MRI and two days after that MRI he started having spasms and that's because that MRI

[00:08:14] had anesthesia and we later found out anesthesia does not sit well with crybaby babies.

[00:08:21] It took about two months to get a diagnosis I mean crybaby so rare so it took a while and a week

[00:08:28] week long hospital visit because he was just so dehydrated and we tried so hard to get food in him

[00:08:35] and he lost like two pounds in a short amount of time and he was just sick and shortly after

[00:08:43] that hospital stay he got the diagnosis and that was three weeks before the COVID shut down.

[00:08:48] It was just like so hard to hear and I know so many people have have gone through something almost

[00:08:56] just exactly like this, it's so frustrating right especially with the newborn screening stuff

[00:09:01] let's actually circle back there and I don't know what I'm talking about right now I'm just so

[00:09:04] annoyed by that okay so when you decided that you had to be a part of this change I want to kind of

[00:09:12] go back to that realization and that sort of charge that you started to lead for yourself and

[00:09:17] for your family and for Dawson because you are from Virginia and at that time there was no screening

[00:09:23] for Krabbe how many states were doing it and kind of give me out the lay of the land of where Krabbe

[00:09:28] was on the rust and newborn screening. I believe at the time there are 10 states I'm not exactly

[00:09:34] sure like when we enter the Krabbe world like how many states but there was a family in Virginia

[00:09:40] the Nicholas family they had already started that bill for Virginia and called Nicholas Law House

[00:09:46] Bill 97 and we kind of once we got connected with them they live like an hour from us so we met

[00:09:53] them in person and we kind of joined in on that fight and we were doing like work groups with

[00:10:01] the Department of Health for Virginia and we were trying to explain to them why early detection

[00:10:09] is so like important and why newborn screening is so important in pleading with them emotionally

[00:10:15] how it is with parents and we just kept getting shut down and shut down and shut down and so when

[00:10:19] it came to the vote in November they said no and that was four days after Dawson passed they said no

[00:10:26] and I was like I had to testify and I'm like literally crying testifying and the fact that they

[00:10:33] said no it was just like terrible so we were trying to do another bill and like a year or two later

[00:10:43] becomes you know Krabbe getting out into the rust and we're think we're there and they voted seven

[00:10:49] to seven so it got knocked down and it's just like we're always so close but then we get another shot

[00:10:57] in this January like this past January they voted 10 to three as a yes and it's just an amazing

[00:11:04] victory like I cried so hard when I saw that they passed it through honestly didn't think it was

[00:11:11] going to happen just because how many times we were said no like they told us no and the fact

[00:11:17] that they actually like finally were like okay it's time now let's get this going like it was just

[00:11:23] an amazing feeling yeah it mystifies me I mean I speak a lot on my issues with the rust

[00:11:30] and newborn screening but this disorder actually has some sort of treatment like obviously it's not

[00:11:36] perfect but it's something if anyone listen to Ann Regari's episode a few episodes ago I'll put it

[00:11:43] in the show notes she had two kids with Krabbe who both passed away but Gina actually lived

[00:11:48] into her teenage years due to a transplant and that's what you're fighting for right is to have

[00:11:54] more time with these beautiful children and to give them more of an opportunity to live their life

[00:11:59] so it's really difficult to understand why states would deny these bills when there is something

[00:12:05] available to help them live past you know 16 18 months old I mean and that's like all we're asking

[00:12:12] like as parents the poor asking for more time I never realized how much time is like how precious

[00:12:18] time is until we went through all of this and I only got 15 months with my son and like I wanted

[00:12:27] more I wanted more I wanted more like of course I'm more time with my son but at that cost it's

[00:12:35] pain like he's through pain so it's bittersweet in that time but I testify when it came to

[00:12:44] the rust and I told them you never know how precious time is until you're given an hour glass

[00:12:49] and you're just waiting for the stand to run out and if that's how it is you're just like it's

[00:12:54] with Krabbe it was just like a waiting game you never knew when that day was gonna come

[00:13:01] it's like every day you walk up like is this gonna be the day is this gonna be the day

[00:13:07] is this gonna be the day that was my son is this gonna be the day and emotionally it's

[00:13:13] torture and you just want to get through to these to the you know department of health these lawmakers

[00:13:19] that wish newborn screening and like translate early detection all that you don't have to look

[00:13:25] like that you know yes like translate is it perfect no is child gonna live like a pathody healthy life

[00:13:33] no but you get that time well and that can't be guaranteed for anyone right like

[00:13:40] you can we hit by bus like today like tomorrow like I mean that's just life

[00:13:46] there's other advocates that come to my mind who are passionate like you with newborn screening

[00:13:51] Taylor Cain and Alisa Seeger who've done so so much for Luka Disterfee's and I wonder what do you

[00:13:58] see your future role being in state legislation for newborn screening and especially Krabbe of course

[00:14:04] and other Luka Disterfee's or or what like what do you think that your advocacy level is gonna be

[00:14:10] at this point moving forward are you kind of gonna take a break because it's done in your state

[00:14:14] and you've accomplished a huge fee already or do you think that you're gonna kind of

[00:14:19] go out further and try to get this on all of the panels last year I was kind of working with

[00:14:25] every life um every life foundation and trying to get Virginia rust aligned but then they pushed

[00:14:32] it back to let's say I was due to this next year and I even worked with my delegate delegate

[00:14:38] auto-waxman um for Southampton County about trying to get Virginia Krabbe disease newborn screening

[00:14:45] but he said because it's not on the rust yet you know let's not go there yet and as soon as

[00:14:50] the rust it got added to the rust I gave him a call he's like let's do this let's do this for

[00:14:55] next year he said and I've been checking he's like I checked though like actually a couple of

[00:15:00] months ago if it was added he he is like let's do this oh my gosh I love that so much good job

[00:15:06] like seeking out your ambassadors and telling your story so they're invested that helps change

[00:15:12] the world yeah we're gonna get it in Virginia I know we are this has been a hard state

[00:15:17] and it's so frustrating because I was born here like I've lived your my whole entire life

[00:15:20] and it's just the fact that like okay you're doing me wrong like come on stop now help me out

[00:15:27] I give all of you who do this legislative policy work for our Red disease community so much credit

[00:15:33] because it is really difficult work and it feels like you're constantly just being pushed down

[00:15:38] the stairs and like your whole existence is in the hands of these strange old people who don't

[00:15:45] seem to be listening and it is so frustrating I've only like dipped my toe in here and there

[00:15:50] here in the state of Washington and it almost seems like a constant uphill battle and it can be

[00:15:56] it can feel really defeating so when there are families like you who have so much on your shoulders

[00:16:03] already who continue to fight for other families it is just I mean it's it's we're so I'm so

[00:16:10] thankful for you Casey I'm so thankful for people like you who do this really hard work because

[00:16:13] it's not like a glamorous type of advocacy it is hard it is really hard we were trying to get past

[00:16:20] the first time I remember I sat in the hotel room with Dawson my husband we went to Maryland for

[00:16:26] like his work whatever and I sat and I wrote every like delegate in Virginia about like

[00:16:33] help me with this bill help me with this bill help me with this bill every senator I mean everybody

[00:16:38] like saying email just change their change the name and a lot of time sending get responses all

[00:16:44] of times it's like oh well you got to contact your delegate but I mean just a how-and-it people

[00:16:51] is it's not for the week no it's really not what kind of advice or maybe like a short to-do list

[00:16:58] would you give someone who's maybe intrigued about policy advocacy in where they could start and

[00:17:05] like what kind of things can they do that'll give them the biggest bang for their book on

[00:17:10] contributing and especially to those people who are like I want to help but I have all of these

[00:17:15] barriers to make me do this and this and this kind of agacity but maybe I can send emails like

[00:17:19] kind of give me a little breakdown about what people can do I would definitely contact every life

[00:17:24] from where to start search your you know your lawmakers like who's in your area especially your

[00:17:30] delegate because they can help they have connections and they can definitely like walk you through

[00:17:35] things because like my delegate he made the calls to like the health advisory board and stuff

[00:17:40] when he was trying to figure out like okay is this a good time to do it what are you thinking

[00:17:44] and he said that you know last year was in a good time because it wasn't on the rust so he did

[00:17:49] what to like for all this time an emotional you know like training into this bill and it just

[00:17:56] gets shut down again but I would definitely talk to your your delegate and call and email I would

[00:18:03] start with the delegate and you know every life foundation can definitely help you on anything

[00:18:08] in worst-creening yeah I need to get the every life foundation on the show I don't know why they

[00:18:12] haven't been on here yet I feel like they have because I you know I'm so embedded but I need to get

[00:18:16] them on here yeah anything policy work definitely contact the every life foundation dot org and they're

[00:18:21] also there's they also run so many workshops and trainings so like they can build you up as an

[00:18:26] advocate like this and they can really give you all the toolkits for you to be successful and make

[00:18:31] this happen in your states and there's just a lot of really beautiful people that that work they're

[00:18:36] involved here there so and getting like your disease organization involved like so for crab

[00:18:42] day is like Hunter's Hope and crab make and um the look at this fee um newborn screening action

[00:18:49] network like anybody that's like related to your disease specific get them into the more than

[00:18:55] the area you know I feel like maybe there's just some sort of magical something or other with families

[00:19:02] who have these beautiful kids with lucodistrophies because I feel like almost everyone I know who is

[00:19:08] pounding the pavement for newborn screening is connected in some way to a lucodistrophy family

[00:19:14] or a parent of one or a sibling or a child and I wonder why and and I think of Alisa's story if

[00:19:21] anyone remembers back to that episode you know her son Aiden was seven and that's when he started

[00:19:27] to have symptoms and get sick and passed away very quickly afterwards but she had been researching

[00:19:32] his symptoms in the hospital when he got sick and she was like wait a second this test was here

[00:19:37] the whole time it just wasn't in New York and I and I wonder if it's just that sort of injustice

[00:19:44] that has fired up this community so much because it's there and treatments are there and states don't

[00:19:50] have them on their on their newborn screening panels how could you not want to burn a building down

[00:19:54] when you knew that it was there and just not there for you the day of diagnosis that and I found

[00:19:59] that there was a newborn screening test and that all for jimmya didn't offer it I was furious I was

[00:20:06] like so I mean I was already like furious about you know getting this diagnosis and grief in all

[00:20:12] of the emissions but when knowledge is said like he wouldn't call it the newborn screening like

[00:20:17] other states and I was just like what like why like why don't we just all offer the same thing

[00:20:23] like why is this why is this a thing I would for sure be in prison to I would be in prison yeah

[00:20:29] guaranteed can you speak on any types of supports or or whatever stuff was most beneficial to you

[00:20:36] in Alex during Dawson's first part of his life like any community supports that really made a

[00:20:42] difference for you or that you would recommend that maybe you found later that helped families

[00:20:46] honestly of the biggest support was like Krabi Kenaik and Hunters Hope and then the Facebook group

[00:20:52] Krabi families I would go on there and ask a question and people would flood like oh try this

[00:20:58] try that try this it was like a family of nurses and doctors on there and everyone says like

[00:21:05] you're more of a doctor than other people because you know your child and everyone says Dr. Esklar

[00:21:11] is way to go or Dr. Kersberg way to go and then you're the next best one because you know your

[00:21:17] child and you know what to do is just such a rare disease you instantly become like a nurse

[00:21:23] for your child I met so many wonderful families on Krabi families Facebook group

[00:21:29] that I'm friends with today and that's been like one of the best things that came out of

[00:21:36] this whole craziness and sadness and like wonderfulness in the same time is meaning these families that's

[00:21:44] been there for us. Amen. How has advocating for Krabi disease and newborn screening changed

[00:21:52] you personally like what's been the most rewarding or or challenging part of this for you like

[00:21:59] in your heart or even practically? It has definitely been it became my new passion

[00:22:05] but not just advocating for Krabi but just for her disease in general like when he passed like I

[00:22:11] knew I wanted to do this like as a corporate or not just volunteer work and I just grinded

[00:22:17] and and cried and brewed to not to any and all rare disease you know like organizations like

[00:22:22] hey you hire and take your hire and like I have this personal experience and I eventually like

[00:22:27] broke that barrier and you know started working for a library and this is just hope foundation

[00:22:32] and that's where I'm at today and it's been the most amazing. I'm finally like where I've wanted to

[00:22:38] be in a long time in honor of Dawson and you know I don't know why Dawson got this diagnosis

[00:22:46] while we lost him like I don't think I'll ever understand the why but I think I'm like heading in

[00:22:53] the direction of like okay he's sending me to do God's work this is not only explanation of

[00:23:00] like where I'm supposed to be or why all this happened if that makes any kind of sense. Of course it

[00:23:08] does I think it makes a lot of sense I think it makes a lot of sense and also none at all because

[00:23:14] like you said it just it just never should have happened in the first place but I very much

[00:23:18] respect you and definitely identify with you in terms of how much fighting for this and changing

[00:23:28] the landscape for the next family and the next family and the next family feels and how much it

[00:23:32] pushes you to do better and be better and the connections that you make so like I I sing your praise

[00:23:39] as there. I mean I totally totally get that and I think it's such a beautiful transformation in this

[00:23:44] whole journey right that could lock you in a dark dark hole forever and ever and one couldn't even

[00:23:50] be shamed by that but the fact that you're out there doing what you're doing and it is helping you

[00:23:57] and helping other people is really really special and I'm glad you're doing it and shout out again

[00:24:03] to library you mentioned them Sierra Phillips and them and also Heidi from my sister's hope oh my

[00:24:08] gosh I'm so glad you found her Heidi is such a hero and she's also been on this podcast my sister's

[00:24:14] hope foundation and she's very active on TikTok now which brings me a lot of joy I love her videos

[00:24:20] so I'm so happy she has you and I think it's really cool too that you're using all of your skills

[00:24:26] for anyone and everyone who is willing to put you on so that's very cool and it's also cool to

[00:24:35] just expand out right and meet all of the other rare disease people not just in your in your

[00:24:40] community because I can imagine too like with the crab bay community that perhaps you can get

[00:24:46] just kind of super laser focused on it right because that's your life.

[00:24:50] Right but you can also get I call it crab bay out where you just see so much crab bay crab

[00:24:56] crab bay and I'm just like okay I can take a break yeah yeah I was thinking like you could probably

[00:24:59] get some sort of like compassion fatigue in a way and like it's just all consuming.

[00:25:06] Right because it just point you flashbacks as everything that happened you know the Dawson

[00:25:10] you're like okay I just take break it's bringing so many flashbacks which also which also takes

[00:25:18] a lot of awareness to get to to know when you got when you got a step back so tell me about your

[00:25:23] family today I know you have another little one yes after Dawson passed we looked into IVF

[00:25:29] and we started that process and we now have Lucas he is almost two and he's completely

[00:25:36] unaffected crab bay does he even carry the genes that's not anything we have to worry about in

[00:25:41] the future yeah he is crazy he is wonderful his favorite word is no and he looks just like Dawson.

[00:25:50] Oh my gosh we named him Lucas after Dawson because Dawson's middle name is Luke and that's why his

[00:25:58] his middle uh his name is spelled L-U-K-A-S is how right after Dawson Luke so beautiful I

[00:26:05] we won't go into it today but probably for the future we'll talk to you and maybe even pop

[00:26:10] Taylor on this episode about IVF for family planning for these types of disorders I know we'd

[00:26:16] chat about maybe talking about that at some point so obviously there's so many families who

[00:26:21] consider going through that with different disorders like crab bay and senflipo and all those things

[00:26:25] so we'll chat about that topic later will you are courageous and brave woman kacy I commend you

[00:26:33] and I think everything that you're doing is so awesome and you're helping to change the world so

[00:26:38] thank you for everything and thank you for sharing Dawson and Luke and your family story

[00:26:42] I know it probably is difficult sometimes but you're making such a big difference so I really

[00:26:47] appreciate you being on this show today to share some of your story and if there's anything else

[00:26:52] that you can leave for anyone any advice any any sort of empowerment to get started and do

[00:26:57] something in advocacy or anyone who's just in the thick of it and who is grieving a loss of the child

[00:27:04] I would say like if you're this thing with like a diagnosis and you're taking care of your

[00:27:09] first-year child like every day you need to have your out like your time two years so I know

[00:27:15] it so cliche to say but you really need to make time for yourself I did that I had like a little

[00:27:22] like crafting psychic but if I would have if I didn't have that I felt like I would have

[00:27:28] like lost myself honestly like take time for yourself read a book go for a walk join the

[00:27:35] ones with pyjee walking therapy oh yes she did I didn't even pay her to say that it's so important

[00:27:42] to take care of yourself when you're going to do like something like this and there's no

[00:27:49] right or wrong way to breathe advocating with my way but if you want to lay in your bed every day

[00:27:55] and watch Netflix that is fine too amen whatever gets you through the day okay kacy well I look

[00:28:04] forward to watching you grow as an advocate and to see all of the amazing things that you contribute

[00:28:11] your talents and skills and heart towards so I appreciate it and thank you so so much no

[00:28:16] phone and I'm gonna get walking I'll get you out there I hope you've been enjoying this podcast

[00:28:24] if you like what you hear please share this show with your people and please make sure to rate

[00:28:29] and review it on iTunes or wherever you get your podcasts you can also head over to Instagram Facebook

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[00:28:40] story or if you have anything you would like to contribute please submit it to my website at feparks.com

[00:28:47] thank you so much for listening to the show and for supporting me along the way I appreciate

[00:28:52] you all so much I don't know what kind of day you're having but if you need a little pick me up

[00:28:56] for it's got you