Hello everyone,

I am reaching out to you on behalf of my cherished friends, who are like family to me. They are facing an unimaginable journey. Their vibrant seven-year-old daughter, Gracie, lover of people, and an absolute beacon of joy, has been recently diagnosed with a rare and devastating terminal genetic disease known as Leukodystrophy, HLD4 to be specific. Gracie is one of only two known cases with this exact subtype. Though 1/7500 births receive a leukodystrophy diagnosis.

Leukodystrophy is a family of genetic disorders that primarily affect the brain, spinal cord, and often the peripheral nerves. With time, Gracie will lose her ability to walk, speak, see, and even eat independently. Unfortunately, there is currently no known cure or treatments for Leukodystrophy, and the form that Gracie has is particularly aggressive.

Gracie is a spirited little girl who radiates joy and kindness. She has never met a stranger. Her favorite thing is meeting new people and becoming the new BFF they didn’t know they were missing in their life.  Her laughter is infectious when she is playing with babies or animals, and her faith and love for Jesus is inspiring. You can often find her praying with someone who is sad or seems down. 

Gracie's family is navigating a heart-wrenching reality, a race against time to create as many beautiful and joyful memories with Gracie while she remains able-bodied.  They are devoted to filling her days with love, laughter, and new experiences - from adventures to meet new people to time spent marveling at God's creatures. 

This is where we can extend our help and support. This family has devoted their life to their community, serving in their church for decades, and Gracie's daddy is also a police officer. They have never taken a handout, it was not easy to get them to agree to let me share this and ask for support. But the family needs funds to continue creating these precious memories. To ensure that Gracie's daddy or mommy doesn't need to take on extra work to make ends meet and can invest that priceless time being by Gracie's side, cherishing every moment.

In addition, there are experimental treatments worldwide that could potentially extend Gracie's life and improve her quality of life. These treatments, however, are expensive and not covered by insurance. But they believe, with unwavering faith, that every chance is worth taking for Gracie. For Gracie they will move mountains!

Your donation, no matter the size, can provide a world of difference. It represents more than monetary aid; it's a gift of time with their child, a possibility for novel treatments, a beacon of hope during their darkest hours.

If you cannot donate, that is OK, we believe in something more powerful than money. We believe in the power of prayer. Your prayers would be highly appreciated. Gracie's middle name is Praise and that is what this sweet family is determined to do throughout this disease. "I will bless the Lord at all times; his praise shall continually be in my mouth" Psalm 34:1

Please consider sharing her story and following her on Instagram to reach more hearts. The more recognition this disease receives the more likely clinical trials and research will be done in the future. 

https://www.instagram.com/fightinghld4withgrace/

On behalf of Gracie's family and from the depth of my heart, I thank you for taking the time to read their story. Your kindness and generosity truly make a difference.

With love,

Shauna