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Advice and guidance from medical professionals and internet searches can only go so far, and the information and images are often scary. The best source of information, to know what it’s really like to have a child with a disability or life-long condition, is from another parent who has a similar child. We are honored and inspired by the parents who have shared their story with us. They inform and encourage others, in similar circumstances, just starting their journey.

We are actively collecting and updating new stories.

We welcome you to check back often, and to share your story. If you or someone you know has a story to share, please contact us to add your story.

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Most Recent Stories

Amanda: Pfeiffer syndrome

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During a prenatal ultrasound, Amanda’s doctors discovered that her daughter, Emmy had some complications. Emmy’s skull had begun to fuse together- a condition known as Craniostenosis. Shortly after Emmy was born, she was diagnosed with Pfeiffer syndrome. Emmy is now 5 months old, and brings so much joy to her family. Even though sweet Emmy may not look typical, she has had no neurological complications- she is right on par with typical babies her age.

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Valarie and David: Down syndrome

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We had the privilege of speaking with 92-year-old David about his daughter, lovingly referred to as Sharmi, and Valerie, Sharmi’s older sister, who eventually became Sharmi’s guardian. Sharmi had Down syndrome and lived most of her life at home. Towards the latter part of her life, Sharmi was placed in a local group home. She passed away a few years ago.

 

When David and his wife found out their daughter had Down syndrome, their doctor gave them a grave picture.

David: “All they could do is lay out a black label — she’s not going to be able to walk, and she’s not going to be able to feed herself.”

 

The doctors encouraged them to put Sharmi in an institution, but David’s wife wouldn’t have it.

David: “She (his wife) said, “No. she’s my daughter; I want to take care of her.”

 

Valerie, Sharmi’s older sister, loved caring for her.

Valerie: “She was our baby sister, and what little girl doesn’t want to help with a baby in the family. She was a baby a lot longer than most babies. When I got older, I realized that babies grew a lot faster than Sharmi did.”

 

The family worked together to teach Sharmi some basic life skills.Sharmi learned to walk, feed herself and accomplish all of the things the doctors said she would never do. She would have never done any of the things that she did if it wasn’t for the family working with her.

Valerie: “We all helped take care of her, and we spent a lot of our play time, especially when we were younger, playing with Sharmi. We wanted to teach her how to walk. She never really did learn to talk. She could say a few words; she could say I love you, but nobody else would be able to understand it. She did much better with the sign language. She was so much fun. She was a person of habit; she liked things the way they were. We would have popcorn on a Sunday night and watch the Wonderful World of Disney. If Dad hadn’t got the popcorn popper out by then to start popping popcorn, she would get the popcorn popper out; she knew the routine.”

 

We asked Valarie when she started to notice Sharmi was different than her others, and what her friends thought of Valarie.

Valerie: “Sharmi was my sister, and that was all I ever thought of her. When my friends would come over to the house, I would introduce her and say, “This is my youngest sister, Sharman, and she has Down syndrome,” and if they didn’t know what Down syndrome was, then I would briefly explain to them. Then it was okay. She was always just part of the family, and I never had any friends who didn’t accept her or who made fun of her.”

 

As a truck driver, David was away from his family a lot. When Sharmi reached her 20s, she lived with her parents and her grandma Lucy, who spent time delighting in Sharmi, introducing her to her friends and dancing with her. But with all the siblings away from home, Sharmi was lonely, and the family decided to place her in a group home with other women who also had developmental disabilities. She’d go home on the weekends. After her mother died, Sharmi spent the weekends with her sister Valerie.

 

Looking back, Valerie is grateful for her sister and everything she learned from Sharmi. She admires the qualities of people with Down syndrome.

Valerie: “They are completely without guile. They love everyone and they’re continually positive. They overlook all of your flaws, and it’s like a spirit surrounds them. We always felt like she had an extremely positive impact on our family. I realized what a wonderful person she was and for the opportunity to have this wonderful person in your life, and to share her with your friends. At the workshop that they had for her, they would iron napkins. Sharman wasn’t able to do the ironing, but her job was to pick up the napkin from the basket and hand it to the girl who was ironing. She was very good at that, and she enjoyed having a job. They just want to be with and participate with everybody else as much as they can, and that’s how she was with our family; if we went, she went.”

 

When Sharmi reached 40, things changed.

Valerie: “It was slow and progressive. We had to stop bringing her home on the weekends, because when she would come, sometimes I’d get her to the house and she wouldn’t come in, or we’d set food on the table, and she loved having dinner at our house always before, but sometimes she wouldn’t eat. I started visiting her more at the group home rather than bringing her home. She still knew who I was; she still responded when I would come, but I could no longer take her shopping and have her try on clothes. Then she started to have some seizures and to have blisters on her feet because her circulation was poor. The last five years she was in a wheelchair. Between the seizure medication and her brain dysfunction, she just couldn’t respond like she used to. She would go every day to the center for people with disabilities, and they do fun stuff all day, and even though she couldn’t participate, she enjoyed going and responded to many of the staff. She just always had this pleasant way about her that just made people love her and want to be around her.”

 

During her last days in the group home with a medical bed and staff to take care of the tasks of showering and feeding, Sharmi contracted pneumonia and was put on hospice. Valerie had mixed feelings at the time.

Valerie: “You didn’t want her to go, but at the same time you did, because you knew that she was suffering and could no longer participate in the world. A couple of weeks later, she passed away very quietly and peacefully, which is what we wanted for her. I don’t think you ever go wrong when you serve somebody, and Sharmi would do anything for anybody that she could.”

Many people with Down syndrome age at an accelerated pace, and many have Alzheimer’s symptoms much earlier than the general population. I was particularly interested in visiting with Valerie and David because they may be an example of how my life will turn out with my daughter with Down syndrome in 30 or so years.

 

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  The doctors encouraged them to put Sharmi in an institution, but David’s wife wouldn’t have it. David: "She (his wife) said, “No. she’s my daughter; I want to take care of her.”   Valerie, Sharmi’s older sister, loved caring for her. Valerie: "She was our baby sister, and what little girl doesn’t want to help with a baby in the family. She was a baby a lot longer than most babies. When I got older, I realized that babies grew a lot faster than Sharmi did."   The family worked together to teach Sharmi some basic life skills.Sharmi learned to walk, feed herself and accomplish all of the things the doctors said she would never do. She would have never done any of the things that she did if it wasn’t for the family working with her. Valerie: "We all helped take care of her, and we spent a lot of our play time, especially when we were younger, playing with Sharmi. We wanted to teach her how to walk. She never really did learn to talk. She could say a few words; she could say I love you, but nobody else would be able to understand it. She did much better with the sign language. She was so much fun. She was a person of habit; she liked things the way they were. We would have popcorn on a Sunday night and watch the Wonderful World of Disney. If Dad hadn’t got the popcorn popper out by then to start popping popcorn, she would get the popcorn popper out; she knew the routine."   We asked Valarie when she started to notice Sharmi was different than her others, and what her friends thought of Valarie. Valerie: "Sharmi was my sister, and that was all I ever thought of her. When my friends would come over to the house, I would introduce her and say, “This is my youngest sister, Sharman, and she has Down syndrome,” and if they didn’t know what Down syndrome was, then I would briefly explain to them. Then it was okay. She was always just part of the family, and I never had any friends who didn’t accept her or who made fun of her."   As a truck driver, David was away from his family a lot. When Sharmi reached her 20s, she lived with her parents and her grandma Lucy, who spent time delighting in Sharmi, introducing her to her friends and dancing with her. But with all the siblings away from home, Sharmi was lonely, and the family decided to place her in a group home with other women who also had developmental disabilities. She’d go home on the weekends. After her mother died, Sharmi spent the weekends with her sister Valerie.   Looking back, Valerie is grateful for her sister and everything she learned from Sharmi. She admires the qualities of people with Down syndrome. Valerie: "They are completely without guile. They love everyone and they’re continually positive. They overlook all of your flaws, and it’s like a spirit surrounds them. We always felt like she had an extremely positive impact on our family. I realized what a wonderful person she was and for the opportunity to have this wonderful person in your life, and to share her with your friends. At the workshop that they had for her, they would iron napkins. Sharman wasn’t able to do the ironing, but her job was to pick up the napkin from the basket and hand it to the girl who was ironing. She was very good at that, and she enjoyed having a job. They just want to be with and participate with everybody else as much as they can, and that’s how she was with our family; if we went, she went."   When Sharmi reached 40, things changed. Valerie: "It was slow and progressive. We had to stop bringing her home on the weekends, because when she would come, sometimes I’d get her to the house and she wouldn’t come in, or we’d set food on the table, and she loved having dinner at our house always before, but sometimes she wouldn’t eat. I started visiting her more at the group home rather than bringing her home. She still knew who I was; she still responded when I would come, but I could no longer take her shopping and have her try on clothes. Then she started to have some seizures and to have blisters on her feet because her circulation was poor. The last five years she was in a wheelchair. Between the seizure medication and her brain dysfunction, she just couldn’t respond like she used to. She would go every day to the center for people with disabilities, and they do fun stuff all day, and even though she couldn’t participate, she enjoyed going and responded to many of the staff. She just always had this pleasant way about her that just made people love her and want to be around her."   During her last days in the group home with a medical bed and staff to take care of the tasks of showering and feeding, Sharmi contracted pneumonia and was put on hospice. Valerie had mixed feelings at the time. Valerie: "You didn’t want her to go, but at the same time you did, because you knew that she was suffering and could no longer participate in the world. A couple of weeks later, she passed away very quietly and peacefully, which is what we wanted for her. I don’t think you ever go wrong when you serve somebody, and Sharmi would do anything for anybody that she could." Many people with Down syndrome age at an accelerated pace, and many have Alzheimer’s symptoms much earlier than the general population. I was particularly interested in visiting with Valerie and David because they may be an example of how my life will turn out with my daughter with Down syndrome in 30 or so years.  ">

Posted June 2018 under Down syndrome- Trisomy 21, Sibling Stories.

Gwen: Asparagine Synthetase Deficiency

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Through Gwen’s second pregnancy, all tests came back normal and she went full term with her baby. After she was born,  her daughter was diagnosed with Asparagine synthetase deficiency– which includes Microcephaly and Epilepsy– as well as DwarfismCortical Visual Impairment, and Cerebral Palsy.

When she was pregnant with her third child, doctors discovered her unborn baby would be born with the same diagnoses.

Gwen opens up about what it has been like raising two profoundly affected children.

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Nicole and Adam: Spina Bifida

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Nicole was pregnant when during an ultra sound, the technician noticed signs of Spina Bifida. Nicole was referred to a Perinatologist, who confirmed the diagnosis. There she was given 3 options: to abort, have surgery in-utero, or wait until her daughter was born to have surgery. Nicole chose to have in-utero surgery.

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Caitlin and Dallin: Spinal Muscular Atrophy, or SMA, Type 1

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Caitlin and Dallin’s daughter, Auni, was 4 months old when they realized she wasn’t developing typically. When Auni was 7 months old, she was diagnosed with Type 1 Spinal Muscular Atrophy, or SMA, which is a terminal diagnosis. Auni lived 22 months before she passed away. Caitlin and Dallin open up about the emotional journey they have been on, and the gift Auni was to them, and the joy she brought to their lives.

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Spinal Muscular Atrophy, or SMA, which is a terminal diagnosis. Auni lived 22 months before she passed away. Caitlin and Dallin open up about the emotional journey they have been on, and the gift Auni was to them, and the joy she brought to their lives.">

Posted May 2018 under Spinal Muscular Atrophy.

Tiffany and TJ: Down syndrome

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Immediately after Tiffany and TJ’s son Austin was born, Tiffany noticed Austin’s almond shaped eyes, and she knew this was a sign of having Down syndrome. She immediately knew he was born with Ds, but they got the official diagnosis from their doctor a week after he was born.

We sat down and talked with Tiffany and TJ about their experience being special needsparents. They told us the challenges and joys they’ve experienced, and the impact he’s made on their immediate and extended family.

Challenges-

Tiffany said “He was three before he really walked. Potty training a child with Down syndrome can be challenging. We potty trained him before he could walk on his own. People with Down syndrome have low muscle tone, so he used a walker. He did really well at potty training for a good year and a half, but not great. He’s currently going through a potty training regression, which is common in kids with Down syndrome.”

Joys-

Tiffany: “I definitely think some of the joys are when he hits develop mental milestones, because that takes a long time. Those were precious and more important than I had remembered before with our other kids, that some things came to them quickly and they knew how to do that. We didn’t feel the triumph of it as much, but those have been some really big joys. He loves people, and he loves to entertain. He’s a big people-person; he wants to be with people and learn. He loves books; that has been a huge joy. Some basic things are appreciated more than with my other kids that came easier to them. I’ve really found a lot of joy in small things.”

Impact-

Tiffany: “For our daughter Jade, it has made her a lot more open and aware of her surroundings. I can see how she interacts with other kids who have Down syndrome, or kids who have any other kind of disability. She’s very cognizant of how she can help others and how she can interact with them. For James, one of the things that was interesting to me was that soon after Austin was born, we had a friend whose son has SMART (Spinal Muscular Atrophy with Respiratory Distress). It’s a very rare disorder, and so shortly after Austin was born, James decided to do a birthday where instead of getting gifts for himself, people would donate to this organization that helped kids with SMART. For our children, it has made them more aware of the world around them and how they can help other people.

They’ve seen us enough with advocacy, working with Down syndrome awareness monthand with World Down syndrome Day. I think that recognition made them want to participate. There was a time where I thought they didn’t need to do anything, because I didn’t want to pressure them to do stuff, but they said they wanted to do something. Even today, we were sharing about something at school so that they could celebrate it with their friends. I think that’s a really good opportunity.”

Impact on their extended family

Tiffany: “They love him; they just cherish him. TJ and I are both only children, so our kids are spoiled rotten by grandparents and great grandparents that live close by. Most of them live close; TJ’s mom lives in Houston, so she’s not too far away. There was some hesitancy at first — not in loving, they’ve always loved him so much — trying to understand what Down syndrome isand what that diagnosis means, and a lot of questions to try to understand better. They really just want to help him and love him and be with him. I don’t see a lot of difference between Austin and our other kids as to how they’ve treated him or loved him more. He’s the youngest, too, so he’s the cuddliest of the three.”

TJ: “It has been interesting to watch, because there’s a generational viewing of Down syndrome, or really any intellectual disability. We were never really bummed about it; it was something that we were thought, “Okay, here we go and this is fine.” For them, watching how their preconceived imaginings of what it might be like to have a child with Down syndrome change because of how we’ve treated Austin, and how Austin has grown up with our other two children has been really interesting to watch.”

Next, we asked them what advice they would give to parents that have just received a new diagnosis for their child-

Tiffany: “They’ll bring so much joy to your life that it’s not something to worry about or have a lot of concern about. Austin hasn’t had medical issues that have caused him to be in the hospital a lot, and there are some who have to deal with that. My personal experience has been that I have no regrets, not that I had a choice to change my mind, but I feel like I’ve been blessed to know him and to be his mom. It’s not something I would worry too much about, because I try to treat him as closely as I can to my older kids. I know he may not meet the milestonesat the age my other kids did, but wherever he is, we work on the next step, whether it’s learning to get dressed himself or potty training. He has always been a good eater, so that hasn’t been a big issue, but there’s a variety of issues, and you don’t know anything really. You can’t plan out your life perfectly; there is no way to do that. Accepting a diagnosisand learning and growing from that has helped us to embrace who he is as a person and not just think about his diagnosis that often. Most of the time, he’s just part of our family. I would tell another parent that same thing. I wouldn’t worry, I would just let life come and do what you need to at different times, but don’t worry a lot. It’s never as bad as you think. There’s so much joy to experience that you won’t miss out on what you think you might be missing out on.”

TJ: “I would agree with what Tiffany said. I think a lot of people find themselves with maybe this vision in their head of what this perfect family is going to be like, and a lot of people don’t envision having those challenges that come with having a child with a disabilityor Down syndrome or whatever it might be. I think that just accept and understand that it’s okay and that it’s different than how you thought it was going to be. In a lot of ways, it’s better, because you get to meet a whole group of people that you wouldn’t have gotten to meet otherwise. You get to learn a whole new set of skills and come in contact with people who really change your life, so don’t sweat it; it will be okay.”

Tiffany: “We started attending (their local Down syndrome association group) after Austin was born. I went to the first meeting. I’m a social worker, so I like group things and support. I thought, okay, he has Down syndrome; let’s go meet some people who have children with Down syndrome and learn from them. I started attending, and I worked for the group for a little bit part-time; now I’m just a volunteer again, and that’s a good place to be, too. It’s amazing the connections that you make meeting people through that group, finding good friends who understand things differently than most.  I still have lots of friends who don’t have a child with a disability, but with the friends that I’ve met through the group, I can call them about something, and they will understand something that somebody else wouldn’t. Facebook messages or finding ways to connect with them has been really helpful along the way. I’m a big advocate of life-long learning, no matter who you are if that’s helpful, so I just felt like when Austin was born, that this is something else we need to learn about. We can do it if we reach out. We’ve gone to national conventions and learned a lot from experts and other parents. It has an been amazing world to step into and to learn from so many people.”

Tiffany and TJ are now heavily involved with the local Down syndrome associationin their community, East Texas Down Syndrome Group, where Tiffany has served as the Executive Director, and they have put together many Walks/runs to raise awareness.

Austin is proof that there is nothing down about it.

 

 

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Joys- Tiffany: “I definitely think some of the joys are when he hits develop mental milestones, because that takes a long time. Those were precious and more important than I had remembered before with our other kids, that some things came to them quickly and they knew how to do that. We didn’t feel the triumph of it as much, but those have been some really big joys. He loves people, and he loves to entertain. He’s a big people-person; he wants to be with people and learn. He loves books; that has been a huge joy. Some basic things are appreciated more than with my other kids that came easier to them. I’ve really found a lot of joy in small things." Impact- Tiffany: "For our daughter Jade, it has made her a lot more open and aware of her surroundings. I can see how she interacts with other kids who have Down syndrome, or kids who have any other kind of disability. She’s very cognizant of how she can help others and how she can interact with them. For James, one of the things that was interesting to me was that soon after Austin was born, we had a friend whose son has SMART (Spinal Muscular Atrophy with Respiratory Distress). It’s a very rare disorder, and so shortly after Austin was born, James decided to do a birthday where instead of getting gifts for himself, people would donate to this organization that helped kids with SMART. For our children, it has made them more aware of the world around them and how they can help other people. They’ve seen us enough with advocacy, working with Down syndrome awareness monthand with World Down syndrome Day. I think that recognition made them want to participate. There was a time where I thought they didn’t need to do anything, because I didn’t want to pressure them to do stuff, but they said they wanted to do something. Even today, we were sharing about something at school so that they could celebrate it with their friends. I think that’s a really good opportunity." Impact on their extended family- Tiffany: "They love him; they just cherish him. TJ and I are both only children, so our kids are spoiled rotten by grandparents and great grandparents that live close by. Most of them live close; TJ’s mom lives in Houston, so she’s not too far away. There was some hesitancy at first -- not in loving, they’ve always loved him so much -- trying to understand what Down syndrome isand what that diagnosis means, and a lot of questions to try to understand better. They really just want to help him and love him and be with him. I don’t see a lot of difference between Austin and our other kids as to how they’ve treated him or loved him more. He’s the youngest, too, so he’s the cuddliest of the three.” TJ: "It has been interesting to watch, because there’s a generational viewing of Down syndrome, or really any intellectual disability. We were never really bummed about it; it was something that we were thought, “Okay, here we go and this is fine.” For them, watching how their preconceived imaginings of what it might be like to have a child with Down syndrome change because of how we’ve treated Austin, and how Austin has grown up with our other two children has been really interesting to watch." Next, we asked them what advice they would give to parents that have just received a new diagnosis for their child- Tiffany: "They’ll bring so much joy to your life that it’s not something to worry about or have a lot of concern about. Austin hasn’t had medical issues that have caused him to be in the hospital a lot, and there are some who have to deal with that. My personal experience has been that I have no regrets, not that I had a choice to change my mind, but I feel like I’ve been blessed to know him and to be his mom. It’s not something I would worry too much about, because I try to treat him as closely as I can to my older kids. I know he may not meet the milestonesat the age my other kids did, but wherever he is, we work on the next step, whether it’s learning to get dressed himself or potty training. He has always been a good eater, so that hasn’t been a big issue, but there’s a variety of issues, and you don’t know anything really. You can’t plan out your life perfectly; there is no way to do that. Accepting a diagnosisand learning and growing from that has helped us to embrace who he is as a person and not just think about his diagnosis that often. Most of the time, he’s just part of our family. I would tell another parent that same thing. I wouldn’t worry, I would just let life come and do what you need to at different times, but don’t worry a lot. It’s never as bad as you think. There’s so much joy to experience that you won’t miss out on what you think you might be missing out on." TJ: "I would agree with what Tiffany said. I think a lot of people find themselves with maybe this vision in their head of what this perfect family is going to be like, and a lot of people don’t envision having those challenges that come with having a child with a disabilityor Down syndrome or whatever it might be. I think that just accept and understand that it’s okay and that it’s different than how you thought it was going to be. In a lot of ways, it’s better, because you get to meet a whole group of people that you wouldn’t have gotten to meet otherwise. You get to learn a whole new set of skills and come in contact with people who really change your life, so don’t sweat it; it will be okay.” Tiffany: "We started attending (their local Down syndrome association group) after Austin was born. I went to the first meeting. I’m a social worker, so I like group things and support. I thought, okay, he has Down syndrome; let’s go meet some people who have children with Down syndrome and learn from them. I started attending, and I worked for the group for a little bit part-time; now I’m just a volunteer again, and that’s a good place to be, too. It’s amazing the connections that you make meeting people through that group, finding good friends who understand things differently than most.  I still have lots of friends who don’t have a child with a disability, but with the friends that I’ve met through the group, I can call them about something, and they will understand something that somebody else wouldn’t. Facebook messages or finding ways to connect with them has been really helpful along the way. I’m a big advocate of life-long learning, no matter who you are if that’s helpful, so I just felt like when Austin was born, that this is something else we need to learn about. We can do it if we reach out. We’ve gone to national conventions and learned a lot from experts and other parents. It has an been amazing world to step into and to learn from so many people." Tiffany and TJ are now heavily involved with the local Down syndrome associationin their community, East Texas Down Syndrome Group, where Tiffany has served as the Executive Director, and they have put together many Walks/runs to raise awareness. Austin is proof that there is nothing down about it.    ">

Posted May 2018 under Down syndrome- Trisomy 21.

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