Hope for Haley - SLC6A1 Connect Fundraiser

Haley's Journey- https://youtu.be/EyDEhE2aKQI

From Haley’s parents, Matt and Emily Haus:

In October of this year, our daughter Haley, through genetic testing was diagnosed with a rare brain disease.This disease is so rare, it is known only by the gene that is affected, SLC6A1. SLC6A1 related disorders cause severe movement and speech disorders, developmental delays (all areas), low tone, features of autism, and epilepsy.

From the very first few months of Haley’s life we suspected her difficulties were abnormal. Learning new skills was extremely hard for her and her development was very delayed. She also had a variety of abnormal movements which we now understand have been seizures all along.

Haley is now almost 3 years old. She is the sweetest girl, our absolute joy. She is naturally loving, good at sharing, and the best big sister. It’s hard to watch her struggle with things such as balance, speech, vision, body awareness/depth perception and feeding herself. Focusing and completing pretty much any simple task is difficult for her due to eyelid seizures, which happen hundreds of times per day.

Our journey with Haley has brought us to low moments, but there is hope for Haley.

SLC6A1 Connect is an amazing nonprofit organization run by dedicated SLC6A1 families. It was actually formed just a few years ago by Amber Freed, a mom of a SLC6A1 child.

We just returned from a symposium during the American Epilepsy Society’s annual meeting in Nashville, TN, and we are strong believers in SLC6A1 Connect.

Thanks to donations to SLC6A1 Connect, there is some amazing cutting edge research being done around the country with medication repurposing, stem cells, and gene therapy. They are currently raising money to hire another scientist to continue research to find a treatment and cure. Two kind anonymous donors are matching up to $32,500 through the end of December!

To be honest, we fear for our daughter’s future. Fear that Haley’s brain will atrophy (has been reported). Fear that Haley will never learn to talk well. Fear that Haley will have a drop seizure and be seriously injured. Fear that Haley will never be independent, or build meaningful relationships. Fear that Haley will get made fun of or that she will never understand Bible stories or the gospel.

Many of these kids (Haley included) face regressions, where they lose the skills they have worked so hard to gain. Some have been able to relearn the skill and others have never gained them back. In the video we show one of Haley’s longest regressions.

There is no way we can encompass how difficult this journey has been for our family. This cause is very real and personal to us. It’s not just a diagnosis, this is a lifelong journey for all of us.

Haley in her first 2 years of life has seen more medical specialists, therapists and had more testing done than many people will ever need.

Rare diseases only get attention or support by family members or individuals who are directly affected. It’s up to us families to fight for this opportunity for a better life for Haley and others. The only way we do that is to raise attention, awareness and fundraising so we can receive medical help for our children just like other well known diseases. The encouraging thing is that it is attainable for us, we just need your help.

Please donate to and share this fundraiser, and bring hope for Haley, and other children whose future will only be as bright as we make it.

From the bottom of our hearts, thank you. We are grateful towards you and may God bless you for your compassionate heart.

-Matt and Emily

More information about SLC6A1 Connect: Our patient advocacy group is funding a cure for a rare neurological disease called SLC6A1 and advancing research in epilepsy, autism and schizophrenia.