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.
Posted: May 21, 2025 by lyndot71
Amy and Brian Rose Discuss Co-Parenting a Child with HPE
Welcome to Families First, the podcast series for, by and about families touched by holoprosencephaly. In this podcast, we’re happy to share the story of a blended family and the lessons in co-parenting a child with HPE Amy and Brian Rose have learned along their family’s journey with daughter Marina.
Posted: March 24, 2025 by Leslie, Sammy's mom
Never Lose HoPE Campaign
We are excited to launch a special fundraising campaign to help you raise awareness for a condition that has affected so many.
For Holoprosencephaly Awareness Week, we commissioned a custom silicone focal bead with the phrase “never lose hope”, and these beads can be used to decorate everyday items that can be worn or used as a conversation starter.
Posted: March 18, 2025 by lyndot71
Spring 2025 HoPE News Newsletter
Posted: February 6, 2025 by lyndot71
Thank you, Donors, For Sharing the Hope in Holoprosencephaly
We at Families for HoPE are sincerely thankful for the donations received last week during “Send the Love,” the micro-giving campaign by Scott Swan and WTHR Channel 13 (NBC) in Indianapolis.
We were honored to be spotlighted as the designated charity for the campaign January 27th through 31st, during which 80 Central Indiana donors gave $5 to $515. The campaign raised $2,675 in support of our mission to empower, educate, support and advocate for all holoprosencephaly families.
“We are thankful to Scott Swan and WTHR Channel 13 and we thank each and every person who contributed to exceeding our campaign goal,” said Families for HoPE Board President Steve Harley. “The outpouring of community support for our mission is heartwarming and inspiring.”
Families for HoPE is the only parent-led organization for families touched by holoprosencephaly worldwide. We support families in Indiana, throughout the United States, and 75 other countries. Each year, Families for HoPE connects more than new 100 families to a compassionate, supportive community of their peers. Our online support community includes 3,200 members and followers on social media.
“The work we do would not be possible without the support of the communities we serve,” said Arika Gates, Board Treasurer. “Every donation counts and every donor’s support is greatly appreciated.”
Families for HoPE has supported children, caregivers and families touched by holoprosencephaly from birth to bereavement since 2006.
Posted: January 27, 2025 by Leslie, Sammy's mom
Send the Love; Share the HoPE
We are honored that Families for HoPE has been spotlighted as the designated charity for this week’s “Send the Love”, a micro-giving campaign by Scott Swan and WTHR Channel 13 (NBC) in Indianapolis. Each week Scott Swan features a small, Central Indiana non-profit organization doing good things in the community, and he asks viewers to make a small, $5 donation to the charity. Viewers can donate by texting the word LOVE to 317-655-5740.
Tune into WTHR this week to see some great photos of kids with HPE and their families and learn more about the campaign.
Posted: December 9, 2024 by Leslie, Sammy's mom
Winter 2024 HoPE Newsletter
Please enjoy this edition of HoPE Newsletter. To read prior issues, click here.
Posted: December 5, 2024 by lyndot71
Thank You for Your Support
THANK YOU
THANK YOU for blessing other HPE families with your compassion, commitment and support every day. You help build a community that is a refuge for families who would otherwise face the journey of caregiving alone.
THANK YOU for supporting people in need overcome the challenges of raising a child diagnosed with HPE. Many have gained information, resources and added confidence -thanks to you.
Most of all, THANK YOU for giving to Families for HoPE. YOU make a huge difference to empower, support, educate, encourage, and advocate for holoprosencephaly families.
WE ARE BETTER TOGETHER! Please share with others and encourage them to make a donation of any amount to support families touched by HPE, during our year-end fundraising campaign. Every dollar makes a difference!
Posted: November 8, 2024 by lyndot71
We’re Better Together – Giving Tuesday, December 3rd
Do you remember a time when everything changed? You had just heard the word “holoprosencephaly” or the phrase “incompatible with life,” and you were given no hope for your beloved child. At that moment and, perhaps, for some time afterward, you were confused, afraid, and alone. Until…
You found Families for HoPE. You were welcomed into a community of others touched by holoprosencephaly, a community where you found acceptance and understanding, compassion and care, information, resources and education. You found support.
Because of you thousands of other parents of a child who has been diagnosed with holoprosencephaly will not be alone. Your giving provides the lifeblood of Families for HoPE, the world’s only parent-led, nonprofit organization that exists to empower, support, educate, encourage, and advocate for holoprosencephaly families. Because you’ve cared enough to give, the world is closer to becoming a world in which all families affected by holoprosencephaly have the knowledge, compassion, care, and support to thrive.
Families for HoPE ensures parents of a child with holoprosencephaly are actively encouraged and supported by their peers, bereaved parents, family and friends find comfort from others who share memories that live on, and the medical community and world grow more aware of the many reasons to share the HoPE in holoprosencephaly.
The work we do together is important. Without you none of this would be possible. Please give so that others can continue to receive greatly needed support. Thank you for your commitment and caring.
Giving Tuesday is December 3rd. Please give.
Welcome 10 New families Comfort 20 Bereaved families Support Outreach
$25 $50 $100
With your caring and generous donation, you and others will continue to receive the greatly needed support we are all seeking. Families for HoPE is a family and it is up to us to continue the support and care for one another. No parents of a child with holoprosencephaly will be alone.
Posted: November 7, 2024 by lyndot71
Meet Amy Rose
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.
Posted: October 23, 2024 by lyndot71
2024 Halloween Costume Contest
Join in the fun! Contest opens October 30th at
gogophotocontest.com/familiesforhope