This week’s blog is written by Dawn Baker, the mother of Joseph and Hannah Baker who you know from our #RareMinds: Youth Campaign on Facebook! Dawn has been brave enough to share her inner thoughts, worries and hopes as she continues to navigate Joseph’s diagnostic odyssey with CRMO beside him. You’ve heard how the rare disease CRMO affects her children, so now it’s time you heard how CRMO affects their mother, Dawn, as both a mom and nurse living out of Texas.

I have been struggling with the decision on whether or not to write about our personal and painful journey with CRMO. Maybe it is the nurse in me, I am not sure, but I think about how many people are struggling with their own issues and wonder if it will bring any benefit to anyone by sharing this…. I don’t know. My hope in sharing our story is that it will give people a moment of thought, to try and give grace to each and every person we come across.

My son Joseph, who you know from Findacure’s #RareMinds: Youth Campaign, was diagnosed with CRMO (Chronic recurrent multifocal osteomyelitis) in 2017 and Crohn’s disease in 2020 although he had suffered for years before his diagnosis. If you have been following my children Hannah and Joseph’s #RareMinds: Youth stories, then you have the basic story – although it is interesting to me that they remember events so differently.

I have been struggling with the decision on whether or not to write about our personal and painful journey with CRMO. Maybe it is the nurse in me, I am not sure, but I think about how many people are struggling with their own issues and wonder if it will bring any benefit to anyone by sharing this…. I don’t know. My hope in sharing our story is that it will give people a moment of thought, to try and give grace to each and every person we come across.

My son Joseph, who you know from Findacure’s #RareMinds: Youth Campaign, was diagnosed with CRMO (Chronic recurrent multifocal osteomyelitis) in 2017 and Crohn’s disease in 2020 although he had suffered for years before his diagnosis. If you have been following my children Hannah and Joseph’s #RareMinds: Youth stories, then you have the basic story – although it is interesting to me that they remember events so differently.

My son was the average kid; not born premature, had no complications during pregnancy, uneventful labor, we even did our homework to research about Crohn’s before getting pregnant since my husband has Crohn’s himself.

Joseph was a very active kid until he was about 10. That’s when I started to notice that after his soccer games it would take him days to recover. Seemed odd to me, but not a red flag. He then began breaking bones, such as his foot, ankle and finger all within a year. I kept asking the doctors to check his bones saying that this wasn’t normal.

The short story is that they said he was active and that this was normal. I would discuss, argue, get a second opinion and still nothing. Joseph spent more time in casts and physical therapy than he did being active. He was becoming sad and frustrated. He was also getting tired of people making comments like, “So, what’s wrong this time?” or “What’s broken now?” I hated people asking because it made me angry. I felt like they were tired of his injuries because they seemed to happen so often. Didn’t they think he was tired, too? Or that my daughter was getting lost in the shuffle of it all?

My son was the average kid; not born premature, had no complications during pregnancy, uneventful labor, we even did our homework to research about Crohn’s before getting pregnant since my husband has Crohn’s himself.

Joseph was a very active kid until he was about 10. That’s when I started to notice that after his soccer games it would take him days to recover. Seemed odd to me, but not a red flag. He then began breaking bones, such as his foot, ankle and finger all within a year. I kept asking the doctors to check his bones saying that this wasn’t normal.

The short story is that they said he was active and that this was normal. I would discuss, argue, get a second opinion and still nothing. Joseph spent more time in casts and physical therapy than he did being active. He was becoming sad and frustrated. He was also getting tired of people making comments like, “So, what’s wrong this time?” or “What’s broken now?” I hated people asking because it made me angry. I felt like they were tired of his injuries because they seemed to happen so often. Didn’t they think he was tired, too? Or that my daughter was getting lost in the shuffle of it all?

I was frustrated in a career that I had spent my life committed to which was failing me… us. I sat in the doctor’s office one day after another injury (this time to his knee) and sobbed talking to the doctor listing all the injuries with dates, how it happened and what the diagnosis was. I told her that there was something wrong with my son and that he was suffering and slowly disappearing. His personality was changing. There wasn’t a day where he didn’t have pain or feel his energy dwindling and he was withdrawing further and further. The doctor agreed to do an X-ray at the time of that injury and then again 8 weeks post-injury to see if there were any changes/healing.

Well, that was the start of our new chapter to a diagnosis. The post-injury X-ray showed no healing, which was strange to me and the doctor. That is when we were sent to go see many different types of doctors, including a gastroenterologist, endocrinologist and rheumatologist. This whole time I was constantly fighting with myself. Am I crazy and being an over protective mother or is there really something wrong?

My gut kept me up many nights trying to be a nurse and a mom and objectively evaluate. There were clues, but no neon signs being flashed that I could pinpoint. Joseph was fading away, losing interest in activities, separating from friends and family and there simply was no joy. Aren’t moms supposed to fix things? Help their children? I wasn’t doing either and it was killing me.

I have never been a really religious person, but I have always been spiritual. I can’t say that I pray, but I have always talked to God; good or bad I always talked, so I guess this was my way of praying. I remember days of asking for strength to get through the moment or the conversation. I remember sharing the good days too, it’s just that there weren’t that many good days back then. I battled with feeling crazy, feeling like I was failing my family and feeling completely helpless. I couldn’t figure out what was wrong, but I could tell you that I knew to the depths of my soul that something wasn’t right. I couldn’t wrap my mind around it, so how could I expect anyone else to?

I was frustrated in a career that I had spent my life committed to which was failing me… us. I sat in the doctor’s office one day after another injury (this time to his knee) and sobbed talking to the doctor listing all the injuries with dates, how it happened and what the diagnosis was. I told her that there was something wrong with my son and that he was suffering and slowly disappearing. His personality was changing. There wasn’t a day where he didn’t have pain or feel his energy dwindling and he was withdrawing further and further. The doctor agreed to do an X-ray at the time of that injury and then again 8 weeks post-injury to see if there were any changes/healing.

Well, that was the start of our new chapter to a diagnosis. The post-injury X-ray showed no healing, which was strange to me and the doctor. That is when we were sent to go see many different types of doctors, including a gastroenterologist, endocrinologist and rheumatologist. This whole time I was constantly fighting with myself. Am I crazy and being an over protective mother or is there really something wrong?

My gut kept me up many nights trying to be a nurse and a mom and objectively evaluate. There were clues, but no neon signs being flashed that I could pinpoint. Joseph was fading away, losing interest in activities, separating from friends and family and there simply was no joy. Aren’t moms supposed to fix things? Help their children? I wasn’t doing either and it was killing me.

I have never been a really religious person, but I have always been spiritual. I can’t say that I pray, but I have always talked to God; good or bad I always talked, so I guess this was my way of praying. I remember days of asking for strength to get through the moment or the conversation. I remember sharing the good days too, it’s just that there weren’t that many good days back then. I battled with feeling crazy, feeling like I was failing my family and feeling completely helpless. I couldn’t figure out what was wrong, but I could tell you that I knew to the depths of my soul that something wasn’t right. I couldn’t wrap my mind around it, so how could I expect anyone else to?

We were now at the point where a geneticist was recommended to confirm Joseph’s osteogenesis imperfecta diagnosis. This doctor was in Delaware. I remember talking to God that night asking for some direction. At this point, Joseph was confined to a bed – walking was impossible and sitting up was impossible. I was taking my son to the bathroom and putting a pool float in the tub so that he would be weightless and the pain would be less. We were up for days at a time getting through his pain, and when I would fall asleep, I would find my daughter sitting next to him rubbing his head to fall asleep. My heart broke every single time I saw her. I was at the end of my rope and so was my family. We went to Delaware with a sliver of hope.

Hannah stayed behind in my feeble attempt to keep things “normal” for her. Joseph was admitted to the children’s hospital and more tests were run…. again. I will never forget the day that he was finally diagnosed. It was March 17, 2017. It had snowed in Delaware that day and Joseph had a shamrock on his pillow case that his nurse put on for him. I remember that some of the doctors could not make it into the hospital because of the snow, so it was another long day of waiting. I remember a doctor whom we had not yet met came in with a smile, introduced himself and said, “I know what your son has…. it’s a classic case of CRMO”.

We were now at the point where a geneticist was recommended to confirm Joseph’s osteogenesis imperfecta diagnosis. This doctor was in Delaware. I remember talking to God that night asking for some direction. At this point, Joseph was confined to a bed – walking was impossible and sitting up was impossible. I was taking my son to the bathroom and putting a pool float in the tub so that he would be weightless and the pain would be less. We were up for days at a time getting through his pain, and when I would fall asleep, I would find my daughter sitting next to him rubbing his head to fall asleep. My heart broke every single time I saw her. I was at the end of my rope and so was my family. We went to Delaware with a sliver of hope.

Hannah stayed behind in my feeble attempt to keep things “normal” for her. Joseph was admitted to the children’s hospital and more tests were run…. again. I will never forget the day that he was finally diagnosed. It was March 17, 2017. It had snowed in Delaware that day and Joseph had a shamrock on his pillow case that his nurse put on for him. I remember that some of the doctors could not make it into the hospital because of the snow, so it was another long day of waiting. I remember a doctor whom we had not yet met came in with a smile, introduced himself and said, “I know what your son has…. it’s a classic case of CRMO”.

Of course, shock hit us all and I must have asked a million questions. We started Joseph on a treatment shortly thereafter. Of course, I was hopeful but unsure at the same time. It was 48 hours later in the hospital when my son had to go to the bathroom and wanted to walk there. I was hesitant, but put on my best poker face and said let’s go. It was the first time in more than a month that he was able to stand and not scream. I helped him do his business, got him settled back in bed, then left the room and sobbed. I wasn’t sure what I was feeling…. grateful that the treatment was helping or sad because he had this disease that he had suffered from for soooo long. All I know is that we reached a milestone and it was a movement in a different direction.

There have been many ups and downs with this disease: physically, emotionally and spiritually. There are good days and we try to make sure that we recognize them and celebrate them. There are still some really bad days too, but we try to wade through them.

This disease has affected each and every one of us in my immediate family to extended family to friends. I have learnt the value of love, friendships and grace to a whole other level. This stinks no doubt about it, but like I have said, we all have our crosses to bare. There are days where I want to stomp my feet and scream that it’s not fair, but this is our path and I will continue the fight, rely on my village and continue to talk to my God.

Of course, shock hit us all and I must have asked a million questions. We started Joseph on a treatment shortly thereafter. Of course, I was hopeful but unsure at the same time. It was 48 hours later in the hospital when my son had to go to the bathroom and wanted to walk there. I was hesitant, but put on my best poker face and said let’s go. It was the first time in more than a month that he was able to stand and not scream. I helped him do his business, got him settled back in bed, then left the room and sobbed. I wasn’t sure what I was feeling…. grateful that the treatment was helping or sad because he had this disease that he had suffered from for soooo long. All I know is that we reached a milestone and it was a movement in a different direction.

There have been many ups and downs with this disease: physically, emotionally and spiritually. There are good days and we try to make sure that we recognize them and celebrate them. There are still some really bad days too, but we try to wade through them.

This disease has affected each and every one of us in my immediate family to extended family to friends. I have learnt the value of love, friendships and grace to a whole other level. This stinks no doubt about it, but like I have said, we all have our crosses to bare. There are days where I want to stomp my feet and scream that it’s not fair, but this is our path and I will continue the fight, rely on my village and continue to talk to my God.

If you missed Joseph and Hannah’s #RareMinds: Youth Campaign stories on living with CRMO, head to our Facebook page now!

If you want to read more stories from rare youth, head to Rare Youth Revolution. The RARE Youth Revolution is an online platform that’s powering up young RARE voices to be heard to help empower a future generation of rare disease advocates. The platform enables each individual to express themselves through their chosen medium, whether that be through written word, spoken language, vlogging, art or any and all means that resonate with them.

The platform’s content is entirely created by young people for young people, because Rare Youth Revolution understands that it’s not easy for young people to find a space where they feel comfortable to open up about living with a rare disease. With that in mind, they have created a fun and interactive news platform for like-minded young people to share their rare disease journeys and open up about how they truly feel about growing up in the world with a rare-difference. Their goal is to make sure that no one is left unheard and that young people from all over the world feel like they have somewhere and someone to turn to when looking to discuss their RARE journey.

If you missed Joseph and Hannah’s #RareMinds: Youth Campaign stories on living with CRMO, head to our Facebook page now!

If you want to read more stories from rare youth, head to Rare Youth Revolution. The RARE Youth Revolution is an online platform that’s powering up young RARE voices to be heard to help empower a future generation of rare disease advocates. The platform enables each individual to express themselves through their chosen medium, whether that be through written word, spoken language, vlogging, art or any and all means that resonate with them.

The platform’s content is entirely created by young people for young people, because Rare Youth Revolution understands that it’s not easy for young people to find a space where they feel comfortable to open up about living with a rare disease. With that in mind, they have created a fun and interactive news platform for like-minded young people to share their rare disease journeys and open up about how they truly feel about growing up in the world with a rare-difference. Their goal is to make sure that no one is left unheard and that young people from all over the world feel like they have somewhere and someone to turn to when looking to discuss their RARE journey.

A parent’s diagnostic odyssey: Braving CRMO as a mother and nurse

by Guest Contributer time to read: 17 min
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