Families for HoPE Board Member Amy Rose Is the Proud Mom of An Adult Daughter with HPE
My name is Amy Rose. I am a mother of an adult child with semi-lobar holoprosencephaly. Her name is Marina Springer and she has an incredibly amazing big brother named Cody Springer.
I did not know Marina had HPE until she was a little older. It wasn’t noticed on any of my sonograms. Marina had severe reflux as an infant and was hospitalized many times due to weight loss. Marina’s PCP sent us to do PT around the age of 12 months because she wasn’t even crawling yet. By 15 months, she hadn’t really made much progress, so we were sent to a pediatric neurologist. An MRI was ordered, and the results were shocking to say the least. That’s a day I will never forget. I was all alone. My husband at the time wouldn’t take off work and my head was spinning. When she was diagnosed with semi-lobar holoprosencephaly, life as I knew it changed that day. I remember putting her in her car seat and getting in the car. The song on the radio was ‘10,000 Angels’, and i just sat there and cried for half an hour.
” That’s a day I will never forget. I was all alone.”
Marina continued getting PT and then OT and speech was added due to her diagnosis. I was told she probably would not walk or talk; however, nobody told her that. When she was about 3 years old, she took her 1st step! With speech therapy and learning some sign language, that we still use today, we were able to understand most of what she was saying.
My kid’s dad and I divorced when my son was 5 and Marina was 3. I was in an abusive marriage, and I wanted my son to know that it’s not ok to treat someone like that. As a single mom, now raising my kids on my own, I knew it was going to be a long road. Marina continued to get all the help she needed through the school district; it took a village. Marina was diagnosed with significant bi-neural hearing loss when she was about 7 years old and started using hearing aids. She also was diagnosed with DI, was never on the growth charts and I gave her the growth hormone injections at home. Her EEG was abnormal, but she didn’t have her first witnessed seizure until she was around 4 years old. She also required AFO Is for her feet as they curved inward and were flat. I took Marina to all her doctor appointments in Topeka and Kansas City by myself as well as getting Cody to all his sports events and games. I honestly don’t know how I did all of it as a single mom, but somehow, I got it done. I was working a full-time job as well.
I found that I wasn’t alone in this journey. It’s hard to get anyone outside of the circle to understand the ups and downs and all the emotions that go with the uncertainty of your child’s future. But at Families for HoPE, they all understand.
I think getting Marina the therapy she needed early on was what helped in this process. She was able to get a case manager early on and found that extremely helpful throughout the years as they helped me with the process of becoming her legal guardian by the time she turned 18 years old.
Currently, my son is serving in the Army National Guard and has a very bright future ahead of him. Marina has continued to amaze us all. She celebrated her 30th birthday on November 3rd this year.
“I found that I wasn’t alone in this journey.”
In 2016, my now husband and I got back in touch. We graduated from the same school, and he had always followed Marina’s story. We moved from the town I raised my kids in for 30 years, back to our hometown. I have my mother living with us so I can take care of her as well. He is so amazing with Marina and the bond they have formed is incredible! Now being married, I look back on all of what I went through with my kids and am so proud of both of them and I know I must have done something right. Marina now has her own craft room and 36 chickens and a dog that she takes care of. Mentally, she’s about 3 years old and has a lot of challenges but nothing has ever taken her down. As all of you know, these kiddos are true warriors.
When Marina was a little over 18 years old, we were asked to be part of a study for adults with HPE at the National Institute of Health in Baltimore. It was extremely educational, especially for her brother.
Thankfully her pediatric neurologist is still her doctor and has learned a lot from her. As you all know, dealing with new doctors that know nothing about our kids is exhausting. The many ER visits and lengthy hospital stays are frustrating when they don’t take the time to listen or learn about holoprosencephaly. So last year while Marina had a few lengthy hospital stays, I made it my goal to educate the nursing staff and hospitalists that came in to care for her. Marina is always placed in the pediatric unit due to her level of comprehension and gained so many friends during her stay.
Currently the most difficult part of having an adult child with HPE is the mental and emotional health. She has autistic qualities and routine is a must. If her day is routine, all is good. However, getting her outside the comfort of her home is a nightmare. Doctor appointments are extremely difficult and going anywhere, even if it’s going to be fun, is emotionally challenging. She has extreme anxiety about going anywhere and has severe separation anxiety if I must go anywhere outside of our home. She must know where I am at, at all times. Date nights for me and my husband are few and far between and now I also have my mom that needs care as well.
Still, I feel truly blessed beyond one’s imagination that I am Marina’s mother. Her pure innocence and loving heart have touched so many lives. I am a very proud mom of a daughter with HoPE.
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Meet Amy Rose
Posted: November 7, 2024 by lyndot71
Families for HoPE Board Member Amy Rose Is the Proud Mom of An Adult Daughter with HPE
My name is Amy Rose. I am a mother of an adult child with semi-lobar holoprosencephaly. Her name is Marina Springer and she has an incredibly amazing big brother named Cody Springer.
I did not know Marina had HPE until she was a little older. It wasn’t noticed on any of my sonograms. Marina had severe reflux as an infant and was hospitalized many times due to weight loss. Marina’s PCP sent us to do PT around the age of 12 months because she wasn’t even crawling yet. By 15 months, she hadn’t really made much progress, so we were sent to a pediatric neurologist. An MRI was ordered, and the results were shocking to say the least. That’s a day I will never forget. I was all alone. My husband at the time wouldn’t take off work and my head was spinning. When she was diagnosed with semi-lobar holoprosencephaly, life as I knew it changed that day. I remember putting her in her car seat and getting in the car. The song on the radio was ‘10,000 Angels’, and i just sat there and cried for half an hour.
” That’s a day I will never forget. I was all alone.”
Marina continued getting PT and then OT and speech was added due to her diagnosis. I was told she probably would not walk or talk; however, nobody told her that. When she was about 3 years old, she took her 1st step! With speech therapy and learning some sign language, that we still use today, we were able to understand most of what she was saying.
My kid’s dad and I divorced when my son was 5 and Marina was 3. I was in an abusive marriage, and I wanted my son to know that it’s not ok to treat someone like that. As a single mom, now raising my kids on my own, I knew it was going to be a long road. Marina continued to get all the help she needed through the school district; it took a village. Marina was diagnosed with significant bi-neural hearing loss when she was about 7 years old and started using hearing aids. She also was diagnosed with DI, was never on the growth charts and I gave her the growth hormone injections at home. Her EEG was abnormal, but she didn’t have her first witnessed seizure until she was around 4 years old. She also required AFO Is for her feet as they curved inward and were flat. I took Marina to all her doctor appointments in Topeka and Kansas City by myself as well as getting Cody to all his sports events and games. I honestly don’t know how I did all of it as a single mom, but somehow, I got it done. I was working a full-time job as well.
I found that I wasn’t alone in this journey. It’s hard to get anyone outside of the circle to understand the ups and downs and all the emotions that go with the uncertainty of your child’s future. But at Families for HoPE, they all understand.
I think getting Marina the therapy she needed early on was what helped in this process. She was able to get a case manager early on and found that extremely helpful throughout the years as they helped me with the process of becoming her legal guardian by the time she turned 18 years old.
Currently, my son is serving in the Army National Guard and has a very bright future ahead of him. Marina has continued to amaze us all. She celebrated her 30th birthday on November 3rd this year.
“I found that I wasn’t alone in this journey.”
In 2016, my now husband and I got back in touch. We graduated from the same school, and he had always followed Marina’s story. We moved from the town I raised my kids in for 30 years, back to our hometown. I have my mother living with us so I can take care of her as well. He is so amazing with Marina and the bond they have formed is incredible! Now being married, I look back on all of what I went through with my kids and am so proud of both of them and I know I must have done something right. Marina now has her own craft room and 36 chickens and a dog that she takes care of. Mentally, she’s about 3 years old and has a lot of challenges but nothing has ever taken her down. As all of you know, these kiddos are true warriors.
When Marina was a little over 18 years old, we were asked to be part of a study for adults with HPE at the National Institute of Health in Baltimore. It was extremely educational, especially for her brother.
Thankfully her pediatric neurologist is still her doctor and has learned a lot from her. As you all know, dealing with new doctors that know nothing about our kids is exhausting. The many ER visits and lengthy hospital stays are frustrating when they don’t take the time to listen or learn about holoprosencephaly. So last year while Marina had a few lengthy hospital stays, I made it my goal to educate the nursing staff and hospitalists that came in to care for her. Marina is always placed in the pediatric unit due to her level of comprehension and gained so many friends during her stay.
Currently the most difficult part of having an adult child with HPE is the mental and emotional health. She has autistic qualities and routine is a must. If her day is routine, all is good. However, getting her outside the comfort of her home is a nightmare. Doctor appointments are extremely difficult and going anywhere, even if it’s going to be fun, is emotionally challenging. She has extreme anxiety about going anywhere and has severe separation anxiety if I must go anywhere outside of our home. She must know where I am at, at all times. Date nights for me and my husband are few and far between and now I also have my mom that needs care as well.
Still, I feel truly blessed beyond one’s imagination that I am Marina’s mother. Her pure innocence and loving heart have touched so many lives. I am a very proud mom of a daughter with HoPE.
Share the HoPE in Holoprosecephaly
Like this:
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