Our Story

Missing Keys To Your Car…

This is a day we will never forget…February 21, 2019.

We sat down knowing this was going to be the hardest appointment of our lives. Three medical personnel walked into the room to give us news that no parent would ever want to hear. We were told it’s like your children have a car, but they don’t have the keys. They can’t start the engine; they can’t roll down the windows; and they can’t turn on the radio. Basically, you have all the parts, but the parts aren’t working and no one has the key.

Three simple words... Multiple Sulfatase Deficiency (MSD). Those three words have completely changed life as we know it. Grace (age 10) and Grant (age 8) have been diagnosed with this rare and terminal disease. Our lives, our dreams for our children, and our future plans have been completely turned upside down.

There have been fewer than 100 reported cases of MSD in the world. At the time of their diagnosis, our children were patients number 18 and 19 living with MSD in the United States.

MSD is a rare and terminal disease that makes the body unable to get rid of cellular waste, which eventually will contribute to a progressive loss of mental abilities and movement. Without a treatment, our children will become severely disabled, suffering dementia, losing their ability to walk, talk, eat, see, and hear. This will force us to make a decision that no parent should have to make. Outwardly our children look healthy, but their bodies are broken on the inside. Typically, children with MSD only survive a few years after the signs and symptoms of the condition appear. Sadly, MSD children often die before their tenth birthday.

Our children are currently very happy, healthy, and they stay busy like all other children. They have not experienced regressions at this time. Grace loves running, singing, dancing, painting, playing dress-up and having tea parties. She takes tap dance and ballet classes. Grant enjoys all things outdoors, especially riding his bicycle and playing baseball. He takes guitar and harmonica lessons, and loves playing with his Hot Wheel cars in his free time.

Our family is learning to live backwards, to savor every precious moment, seeing beauty in everything, because we do not know what tomorrow may look like for our children. We are trusting God with their future.

Rare diseases impact more lives than cancer and AIDS combined, yet 95% of rare diseases lack a FDA approved treatment. There are a small number of research studies going on throughout the world for MSD at this time. Currently, scientists can cure MSD in mice. Funding has been the #1 barrier in pushing treatment options beyond research and into clinical application. Private donations have primarily funded research projects to date. We need funding to get MSD treatment into children. The progress made in developing treatment options not only touches our rare disease population, but is proving to have far reaching implications for other more well know conditions like Alzheimer’s and Parkinson’s disease.

Please help give our children a chance at life and help save other precious lives touched by this terrible disease. There are three ways to become involved with Grant Us Grace:

1. Donate at https://www.cfcmfoundation.org/donations/grant-us-grace-foundation-fund/ or via the “make a donation” link above.

*100% of the proceeds go towards finding a treatment or cure for MSD.

2. Pray.

3. Purchase “How Can I Help? A Children’s Guide To Giving Back.” All proceeds go to our foundation for research.

4. Volunteer. Email grantusgrace2curemsd@gmail.com or submit your information via the “get involved” link above.

5. PLEASE like the Grant Us Grace Facebook page now. Follow our journey and help us drive our campaign forward to give our children and others suffering from MSD a chance at life. Together we can #CUREMSD.