I watched the movie "In My Hands" for the first time about a year ago. The movie is a documentary about marfan syndrome, and it tells bits and pieces of a number of people and families' stories that are affected by marfan syndrome. The first time I watched this movie, I was with the other three officers of the Twin Cities Chapter of the National Marfan Foundation and we were all seeing it for the first time. Through most of the movie, the only sound we heard in the room were each other's tears. Although all of our stories are vastly different this movie was deeply personal for all of us, and touched us all in ways both the same and different. We all finished watching and felt a need to debrief. A counselor would have been handy at that moment. If you've never seen the movie, and have any interest in learning more about marfan syndrome or living with a medical condition I strongly suggest you see it.
Although I don't think there is a boring minute in this movie, there are two parts of this movie that really resonated with me, that haunted me long after the movie finished, and both of them in a sense revolve around the issue of guilt. One of them is when a mom of a marfan child talks about sometimes just wanting to walk away from her child, her husband, everything, just to escape having to deal with marfan syndrome. So here is a secret. I've thought that. I've been that mom. There are days when it seems overwhelming, when the kids are facing something new, when giraffedaddy has some new unexplainable symptom or pain, when I'm faced again with one of the many things we have to tell our kids "no" to in order to keep them safe, and I think wouldn't it be nice to just run away. But I don't, I wouldn't, I couldn't. But even admitting to the thought of it leaves me with a feeling of guilt that I technically could, a freedom none of those I love most have.
The second part of the movie that continued to bug me was a small statement made by a doctor describing the passing on of the marfan gene. I don't remember the exact line or wording, but the gist of the statement was that for most people with marfan syndrome they are able to make a choice to risk passing on the marfan gene, but for the families where spontaneous mutation occurs (25 % of marfan cases) they have no choice. Technically, there really isn't anything wrong with that statement, but emotionally my mind fought what it said. Did we make a choice to pass this on? Do all those affected by marfan syndrome make that choice? Would anyone faced with that "choice" even call it that? I still disagree with how it is worded. It isn't that simple. I didn't make a choice to pass this on to my kids, and neither did my husband. Yes, we knew the statistics, we knew the odds, we knew the 50/50 chance. But we made a much simpler choice. We made a choice to love whatever child God gave us. Before we ever became pregnant we talked about all the things that could go wrong with our child. We talked about the possibility of down syndrome, about whether or not the muscular dystrophy that his cousins had could happen to our child too. And we decided that no matter what, we would love our child exactly as they were. So yes, we made a choice, but it was a choice to love, not a choice of passing on health issues. I firmly stand by the fact that a person with marfan syndrome having a baby makes no more a choice to pass it on than a mother over forty could be said to choose to have a baby with down syndrome. Is the risk higher? Yes. But deep down you never really believe it will happen, you optimistically believe your baby will be healthy and live a long, happy, uncomplicated life. And so many of the best things in life involve risk, so why is this any different? The truth is, it isn't. Marfan syndrome, no marfan syndrome, my kids are who they are meant to be. And if it was a choice we made to pass it on, then I'd make the choice again in a heartbeat to have the joy these kids have brought to our lives. It far outweighs any challenges that come along with their diagnoses.
Saturday, January 28, 2012
Sunday, January 15, 2012
Passing It On....
Long before this blog existed, before I knew what marfan syndrome was, I was just a girl in college who met an interesting boy in college and started hanging out and emailing. It was in one of those emails, during our pre-dating friendship, that giraffedaddy first told me he had marfan syndrome. A few minutes with a search engine on the library's computers had me convinced my friend was going to die any minute of this terrible condition, and I was so scared and heartbroken. A phone call later with assurances that his case was nothing like what I had read had me calmed down and laughing at my overreaction. His case was nothing like what I had read, more a pseudo-marfan syndrome. Yes, his aorta was dilated- but only a little, and he didn't have any of those other things that I had read. Perhaps at the time it would have been wise of me to read a bit more of what I had seen on the web, to have done a bit more research on what he had, but I trusted what he'd been told by doctors all his life and never questioned what he told me. I knew he had a family history of this, but no one in his family had ever had any real complications due to marfan syndrome- no surgeries, no bracing, nothing to fear.
So that college girl and college boy dated, got engaged, got married, and got ready to start a family. Giraffedaddy was nervous about having kids, about the potential to pass this on (a 50/50 chance), but I was adamant it wasn't a big deal. What's to fear? I'm ashamed to admit I even told too many family members that if I had to choose between my kids having marfan syndrome or struggling with my weight issues, I'd pick marfan syndrome. Based on what I knew then, it seemed like the easier choice to a girl who'd been teased for her weight all her life. And for me, having kids was a lifelong dream, and that included carrying them, so it didn't really seem like a choice to me, more like a need.
So after a long time of trying, and a visit to a fertility clinic we were finally waiting for the baby to arrive. Visits to the prenatal geneticist, level two ultrasounds, and then the big day arrived. I have no memories of Giraffeboys' birth, since I was knocked out for an emergency c-section, but I can distinctly remember the first time I saw him, how beautiful he was, and the magnitude of love I felt for him from the start. And one look at his long skinny body, his long skinny fingers and feet, and we knew without a doctors confirmation that we lost the gene lottery, and our boy would have marfan syndrome. And quite frankly, we didn't think it would be a big deal.
Fast forward two and a half years to the birth of giraffegirl. We always knew we'd have a second child, and there was no hesitation to get pregnant again. This time I was awake for the c-section. I remember the first glance I had of her, of thinking she looks so different from her brother, a rounder face and body. She was just as beautiful, I loved her just as much, but there was a relief in me that maybe she wouldn't have to deal with marfan syndrome. Eight months later, after a genetic test done as a precaution by our geneticist, who herself expected the test to be negative, we got the diagnosis that she too had inherited the gene. I grieved that day far more for her than for her brother, probably because I had falsely believed in her health for so long.
It was because the kids had marfan syndrome that we first went to a meeting of the Twin Cities marfan group. I thought it was important to learn more, to meet other parents, to find some support for our kids as they got older and dealt with some of the self-esteem issues that their father had faced because of his marfan syndrome. We walked in that first day and actually said our family had a pseudo-case, nothing to worry about. It's amazing they didn't laugh us out of the room that day. Because we got involved in the end of 2008, as the group was preparing to host the 2009 NMF National Conference at the Mayo, we got drawn in to the conference excitement and attended. It was at that conference, during the Saturday doctor's presentations, that info was distributed about what aortic dilation was needed for preventative surgery. A glance at his measurements from his last echo told us that giraffedaddy was already over that number, and led us to search out a different cardiologist who knew more about marfan syndrome, and who got us scheduled for giraffedaddy's heart surgery 5 months later.
So you could say having kids, passing on this gene, saved my husband's life, or at the very least made for a much less serious surgery. He never would have gone to that meeting if it wasn't for the kids, and we wouldn't have thought to go to conference, or possibly even known about it had we not been involved with the group. We would have gone on naively believing our family's case was mild, with nothing to really worry about. Fear not, we have long quit being those naive people. We now know every case of marfan syndrome is serious. Every person with it needs to have echos and yearly check-ups. We are thankful that so far the kids cases fall somewhere in the middle of the severity spectrum, with no huge concerns thus far, just small challenges. We pray daily for consistency, for no aorta growth, no serious complications. And we take things as they come.
I believe that God played a role in getting us to conference at that exact time, when giraffedaddy's aorta was quickly nearing a critical measurement. I don't think it was an accident or coincidence. Too many things fell into place for us to get there. From the scholarships from the NMF and our local chapter to cover costs, to the nearness of the location, a mere hours drive from our house so we could skip the hotel costs, so many things fell into place to make this work on our limited single-income budget. And I'm grateful everyday for the people we met, the information we learned, and the chance to proactively treat his aorta before a dissection could happen. I know were some of the lucky ones, and our story could easily have a different ending.
So that college girl and college boy dated, got engaged, got married, and got ready to start a family. Giraffedaddy was nervous about having kids, about the potential to pass this on (a 50/50 chance), but I was adamant it wasn't a big deal. What's to fear? I'm ashamed to admit I even told too many family members that if I had to choose between my kids having marfan syndrome or struggling with my weight issues, I'd pick marfan syndrome. Based on what I knew then, it seemed like the easier choice to a girl who'd been teased for her weight all her life. And for me, having kids was a lifelong dream, and that included carrying them, so it didn't really seem like a choice to me, more like a need.
So after a long time of trying, and a visit to a fertility clinic we were finally waiting for the baby to arrive. Visits to the prenatal geneticist, level two ultrasounds, and then the big day arrived. I have no memories of Giraffeboys' birth, since I was knocked out for an emergency c-section, but I can distinctly remember the first time I saw him, how beautiful he was, and the magnitude of love I felt for him from the start. And one look at his long skinny body, his long skinny fingers and feet, and we knew without a doctors confirmation that we lost the gene lottery, and our boy would have marfan syndrome. And quite frankly, we didn't think it would be a big deal.
Fast forward two and a half years to the birth of giraffegirl. We always knew we'd have a second child, and there was no hesitation to get pregnant again. This time I was awake for the c-section. I remember the first glance I had of her, of thinking she looks so different from her brother, a rounder face and body. She was just as beautiful, I loved her just as much, but there was a relief in me that maybe she wouldn't have to deal with marfan syndrome. Eight months later, after a genetic test done as a precaution by our geneticist, who herself expected the test to be negative, we got the diagnosis that she too had inherited the gene. I grieved that day far more for her than for her brother, probably because I had falsely believed in her health for so long.
It was because the kids had marfan syndrome that we first went to a meeting of the Twin Cities marfan group. I thought it was important to learn more, to meet other parents, to find some support for our kids as they got older and dealt with some of the self-esteem issues that their father had faced because of his marfan syndrome. We walked in that first day and actually said our family had a pseudo-case, nothing to worry about. It's amazing they didn't laugh us out of the room that day. Because we got involved in the end of 2008, as the group was preparing to host the 2009 NMF National Conference at the Mayo, we got drawn in to the conference excitement and attended. It was at that conference, during the Saturday doctor's presentations, that info was distributed about what aortic dilation was needed for preventative surgery. A glance at his measurements from his last echo told us that giraffedaddy was already over that number, and led us to search out a different cardiologist who knew more about marfan syndrome, and who got us scheduled for giraffedaddy's heart surgery 5 months later.
So you could say having kids, passing on this gene, saved my husband's life, or at the very least made for a much less serious surgery. He never would have gone to that meeting if it wasn't for the kids, and we wouldn't have thought to go to conference, or possibly even known about it had we not been involved with the group. We would have gone on naively believing our family's case was mild, with nothing to really worry about. Fear not, we have long quit being those naive people. We now know every case of marfan syndrome is serious. Every person with it needs to have echos and yearly check-ups. We are thankful that so far the kids cases fall somewhere in the middle of the severity spectrum, with no huge concerns thus far, just small challenges. We pray daily for consistency, for no aorta growth, no serious complications. And we take things as they come.
I believe that God played a role in getting us to conference at that exact time, when giraffedaddy's aorta was quickly nearing a critical measurement. I don't think it was an accident or coincidence. Too many things fell into place for us to get there. From the scholarships from the NMF and our local chapter to cover costs, to the nearness of the location, a mere hours drive from our house so we could skip the hotel costs, so many things fell into place to make this work on our limited single-income budget. And I'm grateful everyday for the people we met, the information we learned, and the chance to proactively treat his aorta before a dissection could happen. I know were some of the lucky ones, and our story could easily have a different ending.
Saturday, January 7, 2012
Choices
Today I went with my sister to the St. Paul School's Open house at the River Center. Like my youngest, giraffegirl, my nephew will be entering kindergarten this coming fall. Today was an opportunity for us to talk to people from all the elementary schools in one setting, to compare and contrast both the positive and negatives of these 40 or so public school choices. We started the day with a list of five or six schools that were possibilities for her to consider. We talked to the staff that was there from each school, asked questions and spent much of the day overwhelmed. By the time we left the event (over 4 hours after arriving) we had tossed out some schools from her list, added one new school to the list, and narrowed her choices to 4 schools, each with pros and cons. Does she choose the school with the staff that was obviously incredibly passionate about teaching and the principal everyone raves about, but has less perceived parent involvement? Does she send him to the school in which she loves the feel when she has been there, the school he is most familiar with from taking community ed classes, even though the school is predominately white and my nephew is biracial? Does she send him to the sole St. Paul school that has a year-round schedule, which offers science daily in the classroom and lots of diversity, even though it would eliminate some of his summer vacation time with his cousins, and everything she has read says there is no benefit to year round schedules in elementary school? Or does she pick the school with the greatest quoted diversity, but which she is least familiar with and hasn't really felt a draw to before? How do you make that choice? And is there really a bad choice among them? She isn't done with her decision-making process, and has a little over a month to go tour the schools and to possibly attend a PTP meeting at each to see about parent involvement. We've grown up in a family that believes that you can get a good education wherever he goes, that parent involvement and student motivation is more important than the physical building he attends school in, so regardless of where he goes I think he'll end up okay.
The whole experience left me extremely reflective though. I started the day so envious of my sister's choices. We live in one of the farthest out suburbs of the Twin Cities, and we have only one elementary school our kids go to. There isn't a choice for public schools. What a magical opportunity she has to mold her child's educational experience. I expected to be blown away with all the options, and to come home wishing I had stayed in the city where I grew up, instead of following my husband out to his place of origin. And I did see an amazing amount of options, was blown away with all the choices and the difficulty one has making that decision. I don't have a clear idea of what my sister should choose. But somewhere after we left this afternoon, as we over-analyzed her four options over lunch, it dawned on me. Had it been my children I had been searching for a school for, the questions and criterion would have been different. We would have focused less on diversity and how they split up specialist time (gym, music, art, science). Our number one concern would be how they'd be prepared to care for two children with special medical concerns. We'd ask questions like "Have you heard of marfan syndrome?", "What is the break-down of the recess area and will there be a safe place for our children away from balls and impact sports?", and "How flexible will the gym teacher and classroom teacher's be in adapting the curriculum to our children's needs?" Our choices would be less about the options than about our child's safety, less about the dog-and-pony show and more about the general flexibility we felt from the staff and principals. And the repercussions if we would choose wrong seem so much greater. Would they suffer emotionally at a school where differences were less socially accepted, regardless of the flexibility of the staff? And how do you really tell what school would be most open to that, especially when what your children suffer from is rare, when you don't know parents locally who have pioneered this road before you? How do you chance it? How do you live with yourself if the choice you make is wrong? Suddenly I think home schooling may have been a more realistic option for me, that I may have chosen to keep my kids in my own safe cocoon for a long while more.
I'm grateful today for that lack of choice. As I said, we had one school to send our child to if we wanted transportation. So I arrived at that school without another choice, asked those same questions above anyways, and learned that the answer to the first one was "No". Our school hadn't heard about marfan syndrome and had no prior students with it. But then something magical happened anyways. My initial conversations with the nurse happened the spring before my son arrived. For his kindergarten year we met with the teacher and explained his condition, filled in the nurse, and since there was no gym that year, felt safe with the "no balls" rule for kindergarten that they implemented. I felt safe for that year but so fearful of what would happen once gym started. We wrote up his 504 medical plan, with the necessary accommodations for marfan syndrome needed for gym and recess (no high impact sports, shooting hoops, or other things where he had a high chance of getting hit in the head with a ball or getting hit in his body. No forced running, rest when he feels he needs to). And we started the summer wait before first grade started. And here's where the real magic happened. I read about people's school experiences with marfan syndrome on NMF connect and other marfan blogs. I somewhat expected a battle for my son. Instead, we met before this school year began and were greeted by a staff that had not only researched marfan syndrome but had discovered it qualifies as a disability in Minnesota, automatically qualifying him for special education services in our state in only one area (you normally need 2). Pretty soon they were helping to advocate for what is best for our son, and the majority of the fears I had disappeared. Really, what I've found in this school that wasn't our "choice" is more valuable than a million options at a hundred other schools. I've found peace-of-mind, security, a caring staff, and my son flourishing. It doesn't hurt that our school happens to be in the top 40 schools in the state for test scores and other things they compare. But it isn't perfect. I crave the diversity my nephew will get in his school he goes to. But the grass out here is green enough for me, I don't need the other side. Today I was reminded that sometimes having no choice is what I still choose. Sometimes, having choices is overrated.
The whole experience left me extremely reflective though. I started the day so envious of my sister's choices. We live in one of the farthest out suburbs of the Twin Cities, and we have only one elementary school our kids go to. There isn't a choice for public schools. What a magical opportunity she has to mold her child's educational experience. I expected to be blown away with all the options, and to come home wishing I had stayed in the city where I grew up, instead of following my husband out to his place of origin. And I did see an amazing amount of options, was blown away with all the choices and the difficulty one has making that decision. I don't have a clear idea of what my sister should choose. But somewhere after we left this afternoon, as we over-analyzed her four options over lunch, it dawned on me. Had it been my children I had been searching for a school for, the questions and criterion would have been different. We would have focused less on diversity and how they split up specialist time (gym, music, art, science). Our number one concern would be how they'd be prepared to care for two children with special medical concerns. We'd ask questions like "Have you heard of marfan syndrome?", "What is the break-down of the recess area and will there be a safe place for our children away from balls and impact sports?", and "How flexible will the gym teacher and classroom teacher's be in adapting the curriculum to our children's needs?" Our choices would be less about the options than about our child's safety, less about the dog-and-pony show and more about the general flexibility we felt from the staff and principals. And the repercussions if we would choose wrong seem so much greater. Would they suffer emotionally at a school where differences were less socially accepted, regardless of the flexibility of the staff? And how do you really tell what school would be most open to that, especially when what your children suffer from is rare, when you don't know parents locally who have pioneered this road before you? How do you chance it? How do you live with yourself if the choice you make is wrong? Suddenly I think home schooling may have been a more realistic option for me, that I may have chosen to keep my kids in my own safe cocoon for a long while more.
I'm grateful today for that lack of choice. As I said, we had one school to send our child to if we wanted transportation. So I arrived at that school without another choice, asked those same questions above anyways, and learned that the answer to the first one was "No". Our school hadn't heard about marfan syndrome and had no prior students with it. But then something magical happened anyways. My initial conversations with the nurse happened the spring before my son arrived. For his kindergarten year we met with the teacher and explained his condition, filled in the nurse, and since there was no gym that year, felt safe with the "no balls" rule for kindergarten that they implemented. I felt safe for that year but so fearful of what would happen once gym started. We wrote up his 504 medical plan, with the necessary accommodations for marfan syndrome needed for gym and recess (no high impact sports, shooting hoops, or other things where he had a high chance of getting hit in the head with a ball or getting hit in his body. No forced running, rest when he feels he needs to). And we started the summer wait before first grade started. And here's where the real magic happened. I read about people's school experiences with marfan syndrome on NMF connect and other marfan blogs. I somewhat expected a battle for my son. Instead, we met before this school year began and were greeted by a staff that had not only researched marfan syndrome but had discovered it qualifies as a disability in Minnesota, automatically qualifying him for special education services in our state in only one area (you normally need 2). Pretty soon they were helping to advocate for what is best for our son, and the majority of the fears I had disappeared. Really, what I've found in this school that wasn't our "choice" is more valuable than a million options at a hundred other schools. I've found peace-of-mind, security, a caring staff, and my son flourishing. It doesn't hurt that our school happens to be in the top 40 schools in the state for test scores and other things they compare. But it isn't perfect. I crave the diversity my nephew will get in his school he goes to. But the grass out here is green enough for me, I don't need the other side. Today I was reminded that sometimes having no choice is what I still choose. Sometimes, having choices is overrated.
Thursday, January 5, 2012
The Journey Begins
For years I've talked about starting a blog about my family, about the joys and challenges giraffedaddy and I face raising two kids with marfan syndrome while dealing with his health issues too. I've even considered what I would write, who would want to read it, and what was the pull to do this in blog form instead of a personal paper journal? The answer...I don't completely know. But then I had a particularly bad November. Giraffegirl had eye surgery, which was not completely successful. Giraffeboy got foot orthotics for the first time, and suddenly something as simple as boots and snowpants for a 7 year old that he could navigate himself over the orthotics became a gigantic obstacle to surmount. And mostly, I felt really alone in a sea of people with perfectly healthy kids. And then I read a entry from a blog that a friend posted on Facebook from the mother of an autistic boy. Her challenges were nothing like mine, her victories for her child were completely different, and yet the connection to her over raising "different" kids felt so tangible to me. You could say that was the final kick in the pants I needed to start this blog. If in the course of posting our experiences it helps even a single person feel less alone in the world, then it is worth my time. And if while doing so I can help educate even just my friends and family about marfan syndrome, and the things I don't generally talk about, then all the better.
It seems wrong to have a first post and not talk about what marfan syndrome is. Marfan syndrome is a genetic condition that affects about 1 in every 5000 people. It is a connective tissue disorder, and since every part of our body is made of connective tissue it's affect on a person can be widespread. The most dangerous possible symptom for someone with marfan syndrome is an enlarged aorta. Undiagnosed and unmonitored it can lead to an aortic dissection, and then death. To make it even more challenging to diagnose and treat, it affects every person differently, so that no two cases of marfan syndrome are exactly alike. In our family, the kids are more affected then giraffedaddy. Giraffedaddy had a dilated aorta, but had his ascending aorta replaced in February of 2010 at the Mayo Clinic (He was dilated to 4.6 cm when they did the surgery). He suffers from joint pain (especially the hip), and since surgery he has developed temporal lobe epilepsy (more on that a different day). He has pectus carinatum (his sternum protrudes out). He has no eye issues from his marfan syndrome. He has flat feet and hammer toes, typical things in affected people. Giraffeboy was diagnosed by us when he was born, but had this confirmed when he was 18 months old. His aorta is dilated, his lenses are dislocated, and he has incredibly flat feet and is losing flexibility in his heels. He recently started wearing orthotic AFO's to help increase his heel flexibility and to provide ankle support for proper joint placement. We are hoping this helps to minimize pain he may deal with as he gets older. Giraffegirl was our surprise case of this, as she seemed unaffected when she was born. She also has a dilated aorta.She has pectus excavatum (her sternum is sunken in). She has lazy eye, which she recently had surgery to help fix. Although her ability to pull her eyes back in from wandering has improved, her tendency to wander has not, so the surgery was not completely successful. She also has orthotics, but for her in the daytime she wears SMO's, one of which is trimmed down to the top of her shoe, and the other slightly higher. She has a special orthotic at night she must wear to increase flexibility in her left ankle, which goes up to her mid-thigh. She has had orthotics since before she could walk, and although she doesn't always wear them she has always had a version of them since about 18 months. She also has hammer toes. In addition to all of this she is our slow developer. Every childhood milestone she took her time with, and was the last of her friends to really walk, talk, etc. Although there is no positive proof connecting this to marfans, I share other parents belief that it is related to her condition.
And with these words, let this journey begin. I'm so excited to see where it takes me!
It seems wrong to have a first post and not talk about what marfan syndrome is. Marfan syndrome is a genetic condition that affects about 1 in every 5000 people. It is a connective tissue disorder, and since every part of our body is made of connective tissue it's affect on a person can be widespread. The most dangerous possible symptom for someone with marfan syndrome is an enlarged aorta. Undiagnosed and unmonitored it can lead to an aortic dissection, and then death. To make it even more challenging to diagnose and treat, it affects every person differently, so that no two cases of marfan syndrome are exactly alike. In our family, the kids are more affected then giraffedaddy. Giraffedaddy had a dilated aorta, but had his ascending aorta replaced in February of 2010 at the Mayo Clinic (He was dilated to 4.6 cm when they did the surgery). He suffers from joint pain (especially the hip), and since surgery he has developed temporal lobe epilepsy (more on that a different day). He has pectus carinatum (his sternum protrudes out). He has no eye issues from his marfan syndrome. He has flat feet and hammer toes, typical things in affected people. Giraffeboy was diagnosed by us when he was born, but had this confirmed when he was 18 months old. His aorta is dilated, his lenses are dislocated, and he has incredibly flat feet and is losing flexibility in his heels. He recently started wearing orthotic AFO's to help increase his heel flexibility and to provide ankle support for proper joint placement. We are hoping this helps to minimize pain he may deal with as he gets older. Giraffegirl was our surprise case of this, as she seemed unaffected when she was born. She also has a dilated aorta.She has pectus excavatum (her sternum is sunken in). She has lazy eye, which she recently had surgery to help fix. Although her ability to pull her eyes back in from wandering has improved, her tendency to wander has not, so the surgery was not completely successful. She also has orthotics, but for her in the daytime she wears SMO's, one of which is trimmed down to the top of her shoe, and the other slightly higher. She has a special orthotic at night she must wear to increase flexibility in her left ankle, which goes up to her mid-thigh. She has had orthotics since before she could walk, and although she doesn't always wear them she has always had a version of them since about 18 months. She also has hammer toes. In addition to all of this she is our slow developer. Every childhood milestone she took her time with, and was the last of her friends to really walk, talk, etc. Although there is no positive proof connecting this to marfans, I share other parents belief that it is related to her condition.
And with these words, let this journey begin. I'm so excited to see where it takes me!
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