Give Elouise a Fighting Chance
Donation protected
My name is Michele, and over the last few years, I’ve had to watch my daughter deteriorate right before my eyes. Elouise is a bright and beautiful young girl, and it breaks my heart that she’ll never get the future she deserves. Even worse, it terrifies me that, without a cure, she won’t have a future at all. We need your help to give Elouise, and kids like her, a fighting chance.
Elouise’s Story
Elouise was born in 2005, showing no signs she was anything but a happy, healthy baby. She began walking, running, and playing just like any other child her age. Then, at around age 3, she started pulling up her right arm when running. Someone suggested an MRI, which showed delayed myelination and an undersized cerebellum. Thus began the endless journey of test after test.
In 2014, Elouise was diagnosed with H-ABC, a rare genetic disorder that progressively damages the nervous system—a disease that currently has no cure.
When we learned that Elouise’s health would continue to decline and her life expectancy would be shortened, we were devastated. It’s any parent’s worst nightmare. Yet, this is the reality for those whose children suffer from H-ABC. This is the reality for my husband and me.
Since being diagnosed, Elouise has lost her ability to stand, dress, bathe, and eat without assistance and can no longer walk. The slow progression of the disease has caused scoliosis and hip subluxation, for which she’s undergone hours of surgery. And she recently underwent even more surgery, as she’s no longer eating enough to gain weight and had to have a feeding tube implanted in her stomach.
But we’re not giving up without a fight. We won’t just allow this disease to rob Elouise, and other kids like her, of a future. We’re ready and willing to go against the odds to save these kids.
Wouldn’t you?
The Fight
H-ABC is a rare genetic disorder that affects infants and children—one that’s caused by a mutation in the TUBB4A gene. Due to this mutation, certain brain cells aren’t fully covered by myelin, a substance that insulates nerve cells to help them work better. Also, this condition causes the breakdown of the basal ganglia and cerebellum—two parts of the brain that control movement.
As the disease progresses further, Elouise, and children like her, will continue to lose other body functions until it’s too late.
The good news is there’s hope. The Children’s Hospital of Philadelphia (CHOP), for example, has started exploring gene therapy as a potential cure.
The Goal
Our goal is to raise $100,000 in the next 12 months to help fund research for a cure.
That’s why we’re asking for your support—so that, together, we can give Elouise, and children like her, a fighting chance.
Don’t let H-ABC win. Help us find a way to fight back. Be a hero to Elouise and other children affected by H-ABC.
How You Can Help Now
1. Give whatever you can. Any amount is appreciated.
2. Share on social media with the following hashtags: #FightHABC, #SaveAChild.
3. Send this GoFundMe link to your email contacts.
4. Get the word out to the media.
5. Sign up to be a peer advocate and fundraise with us. Create your own personal fundraising page for the cause or host an event.
6. Use any other method you can to spread awareness.
How Your Money Is Being Used
All proceeds go directly to efforts for curing H-ABC. Donations will be used for several purposes, primarily to fund the genetic research and related costs as well as to establish facilities where doctors can study longitudinal patient data, which is critical for clinical trials.
Why We’re Asking for This Much
The process of developing a clinical trial is costly. And since H-ABC is a rare disease, there is little interest in funding the research. It’s up to us, along with fundraising efforts by hospitals and grants from various institutional sources, to get the trial up and running.
Why We Need to Act Fast
Elouise and other children affected by H-ABC have no time to lose. Without a cure, the disease will continue to progress, resulting in the loss of other body functions until it’s too late.
How the Cure Will Be Reached
1. Perform cellular-level research of the disease—COMPLETE
2. Research biological makeup of the disease—COMPLETE
3. Determine best approach for gene therapy—IN PROGRESS
4. Get FDA approval for clinical trial
5. Start clinical trial
Website & Social Media
Foundation to Fight H-ABC
Facebook
YouTube
We are eternally grateful for your support in giving Elouise, and other kids like her, a fighting chance. No act of kindness is too small in raising awareness of our cause.
Elouise’s Story
Elouise was born in 2005, showing no signs she was anything but a happy, healthy baby. She began walking, running, and playing just like any other child her age. Then, at around age 3, she started pulling up her right arm when running. Someone suggested an MRI, which showed delayed myelination and an undersized cerebellum. Thus began the endless journey of test after test.
In 2014, Elouise was diagnosed with H-ABC, a rare genetic disorder that progressively damages the nervous system—a disease that currently has no cure.
When we learned that Elouise’s health would continue to decline and her life expectancy would be shortened, we were devastated. It’s any parent’s worst nightmare. Yet, this is the reality for those whose children suffer from H-ABC. This is the reality for my husband and me.
Since being diagnosed, Elouise has lost her ability to stand, dress, bathe, and eat without assistance and can no longer walk. The slow progression of the disease has caused scoliosis and hip subluxation, for which she’s undergone hours of surgery. And she recently underwent even more surgery, as she’s no longer eating enough to gain weight and had to have a feeding tube implanted in her stomach.
But we’re not giving up without a fight. We won’t just allow this disease to rob Elouise, and other kids like her, of a future. We’re ready and willing to go against the odds to save these kids.
Wouldn’t you?
The Fight
H-ABC is a rare genetic disorder that affects infants and children—one that’s caused by a mutation in the TUBB4A gene. Due to this mutation, certain brain cells aren’t fully covered by myelin, a substance that insulates nerve cells to help them work better. Also, this condition causes the breakdown of the basal ganglia and cerebellum—two parts of the brain that control movement.
As the disease progresses further, Elouise, and children like her, will continue to lose other body functions until it’s too late.
The good news is there’s hope. The Children’s Hospital of Philadelphia (CHOP), for example, has started exploring gene therapy as a potential cure.
The Goal
Our goal is to raise $100,000 in the next 12 months to help fund research for a cure.
That’s why we’re asking for your support—so that, together, we can give Elouise, and children like her, a fighting chance.
Don’t let H-ABC win. Help us find a way to fight back. Be a hero to Elouise and other children affected by H-ABC.
How You Can Help Now
1. Give whatever you can. Any amount is appreciated.
2. Share on social media with the following hashtags: #FightHABC, #SaveAChild.
3. Send this GoFundMe link to your email contacts.
4. Get the word out to the media.
5. Sign up to be a peer advocate and fundraise with us. Create your own personal fundraising page for the cause or host an event.
6. Use any other method you can to spread awareness.
How Your Money Is Being Used
All proceeds go directly to efforts for curing H-ABC. Donations will be used for several purposes, primarily to fund the genetic research and related costs as well as to establish facilities where doctors can study longitudinal patient data, which is critical for clinical trials.
Why We’re Asking for This Much
The process of developing a clinical trial is costly. And since H-ABC is a rare disease, there is little interest in funding the research. It’s up to us, along with fundraising efforts by hospitals and grants from various institutional sources, to get the trial up and running.
Why We Need to Act Fast
Elouise and other children affected by H-ABC have no time to lose. Without a cure, the disease will continue to progress, resulting in the loss of other body functions until it’s too late.
How the Cure Will Be Reached
1. Perform cellular-level research of the disease—COMPLETE
2. Research biological makeup of the disease—COMPLETE
3. Determine best approach for gene therapy—IN PROGRESS
4. Get FDA approval for clinical trial
5. Start clinical trial
Website & Social Media
Foundation to Fight H-ABC
YouTube
We are eternally grateful for your support in giving Elouise, and other kids like her, a fighting chance. No act of kindness is too small in raising awareness of our cause.
Organizer
Michele Levoir Sloan
Organizer
Rockville, MD