Lingxi’s GM1 Story, as told by her father
Her GM1 Story
” We have been very sad, and my wife cried for months. However, with the diagnosis, we feel we are gaining a clearer direction and are no longer as lost as before.”
What is the impact of GM1 on your child?
My child is developmentally delayed in various aspects. Before the genetic testing, we thought she could improve with more physical activities, so we spent a lot of time and money on helping her practice walking, learning to dance, and doing physical therapy. During that period, our lives revolved around making money and taking her to different physical therapy sessions. Yet, she still sometimes regressed.
Because of GM1, her posture is abnormal. Her motor skills are far behind those of her peers. Her speech is unclear, and she cannot focus in class. As she grows older, these issues have not improved and worsen with time.
What do you wish people understood
more about rare diseases?
Every family dealing with rare disease faces immense psychological pressure. Our hope is that children with rare diseases can grow up in a loving environment and that they can avoid curious looks and discrimination.
Please get genetic testing for both partners before pregnancy to rule out GM1 and other rare diseases. Our hope is that everyone has a chance to have healthy children and not go through the pain we have experienced.
Why should people support the Cure GM1 Foundation and rare diseases?
We try to make every day as happy as possible, giving our child more beautiful experiences and memories.
The Cure GM1 Foundation is undertaking a great endeavor. It connects patients and researchers, ensuring that families are not alone and can avoid unnecessary detours. Cure GM1 gives hope to families and keeps us informed about the latest advancements in research and drug development. We hope people will continue to support the Cure GM1 Foundation. Conquering rare diseases is a shared goal for all of humanity.