You Are Not Alone

Dear Parents and Loved Ones,

We want to begin by saying that we see you, we sympathize with your cries, and we are with you in this journey. No one can truly understand the weight of emotions and challenges that come with an ultra rare disease diagnosis until they've been there themselves. We are parents just like you, and our hearts ache for the moment you received that life-altering news about your precious child.

Our daughters, Kinsley and Harlow, are two years old, and like your child, they too carry the burden of an ultra rare disease caused by a gene mutation on the TUBB4A gene. It's a diagnosis that shook our worlds less than a year ago, and we vividly remember and still feel the feelings of despair, fear, and uncertainty that washed over us. We remember being told to "enjoy the time we have left" with our daughters, and it's a sentence that no parent should ever have to hear.

But here's what we want you to know – your child was made to be in this world. Their existence is a testament to strength, resilience, and the power of love. We may have received devastating news, but it doesn't define the incredible potential and beauty within our children. They are not statistics or mere case studies; they are unique, remarkable individuals who deserve every chance to thrive.

It's in these darkest moments that we found the strength to start the Kinslow TUBB4A Foundation. We refuse to accept a bleak prognosis as the final word. Instead, we choose to be beacons of hope, not only for our own children but for all the families walking this challenging path.

We are here to support you, to advocate for your child's needs, and to champion research and treatments that can bring about change. Our foundation is not just about raising awareness; it's about taking action. It's about finding the brightest minds in the medical field, collaborating with them, and pushing boundaries to discover new treatments and therapies. We are warriors, fighting for our children's future.

So, dear parents, as you navigate this journey, know that you are not alone. Reach out to us, lean on us, and let us stand together. Together, we can defy the odds and show the world the indomitable spirit of our children. Together, we can write a different story, one filled with hope, progress, and endless love.

With unwavering support and compassion,

Sarah & Daphne

Co-Founders of Kinslow TUBB4A Foundation