Stories

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

Rebekah and Chris: Dwarfism-Achondroplasia

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Rebekah and Chris have Achondroplasia, a form of Dwarfism.

They have 2 children, one that has Dwarfism, and one that does not.

Rebekah and Chris open up about what it’s like living as a little person, and how they feel now that they have a daughter with the same condition.

Rebekah is a great resource to parents who receive a Dwarfism diagnosis for their child. You can read a letter she has written to these parents here.

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Achondroplasia, a form of Dwarfism. They have 2 children, one that has Dwarfism, and one that does not. Rebekah and Chris open up about what it's like living as a little person, and how they feel now that they have a daughter with the same condition. Rebekah is a great resource to parents who receive a Dwarfism diagnosis for their child. You can read a letter she has written to these parents here.">

Posted July 2018 under Achondroplasia, Dwarfism, Prenatal diagnosis.

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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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.

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