Imagine taking your child to the doctor for a regular checkup appointment and being told that your child has a rare genetic disease. Furthermore, there is no cure for the disease, and, worse yet, doctors do not expect your child to live beyond 10 or 12 years old!
This is exactly what happened to Mark and Jeanne Dant. Their only son Ryan, who was three at the time, seemed normal, active and healthy. But upon further genetic testing, they discovered that he had a rare disease called mucopolysaccharidosis type 1, or MPS 1. This disease is so rare that it affects less than 5,000 people in the United States.
People with MPS 1 do not make a digestive enzyme that breaks down large sugars, causing a number of serious medical problems. Ryan’s symptoms were numerous and severe. He had a constant severe headache, swollen internal organs such as his liver and spleen, which caused his stomach to be more than twice its normal size. He often lost his balance, and his hands and limbs were stiffening.
The human body is so amazing! Just one tiny thing or part that is missing can have such an impact on our health and daily lives. The Bible tells us that we are “fearfully and wonderfully made” (Psalm 139:1414I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. (Psalm 139:14)). It also tells us who made us and that we have our life directly as a gift from God. “The Lord God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living soul” (Genesis 2:77And the Lord God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living soul. (Genesis 2:7)).
Desperate to Help
Desperate to help his son, Mark took out a book on fundraising from the local library. Their first effort was to have a bake sale, which raised $342. Encouraged, they started The Ryan Foundation to raise funds for research for Ryan and others with MPS 1. After many successful events, the family had raised hundreds of thousands of dollars to contribute to any research being done for MPS 1.
But there was a big problem. Ryan’s health was getting worse and worse. Time was running out, so Ryan’s parents desperately searched for someone who was actively researching MPS 1. Due to their dogged determination, they found Dr. Emil Kakkis, who was a physician/scientist working out of a lab at the University of California in Los Angeles. He had been researching MPS 1 and enzyme replacement therapy specifically, but he was running out of funds and on the verge of having to quit.
When Ryan’s parents met Dr. Kakkis in 1995, four years after Ryan’s diagnosis, it was a perfect match. Ryan needed the research and Dr. Kakkis and his team needed The Ryan Foundation’s funds. All of a sudden, MPS 1 research had new meaning! Dr. Kakkis recalled, “Meeting Mark and Ryan and Jeanne gave me an inspiration as to what this was really about. It’s not a science project. It’s a human project to save Ryan.”
The Dant’s love for their son was so strong and powerful that they did not give up searching for someone that could help them, even though it took a lot of effort and time. In the end, they were rewarded. This is what every one of us needs to do when it comes to our soul’s salvation. We need to be in earnest, and we need to diligently seek the forgiveness God offers. God promises, “Ye shall seek Me, and find Me, when ye shall search for Me with all your heart” (Jeremiah 29:1313And ye shall seek me, and find me, when ye shall search for me with all your heart. (Jeremiah 29:13)). God wants you to know Him and to come to Him in faith and repentance because He “is long-suffering to usward, not willing that any should perish, but that all should come to repentance” (2 Peter 3:9).
In 1997, Dr. Kakkis’ team got another boost of funding from a biotech company which enabled them to press forward with clinical trials. Then, “on February 13, 1998, Dr. Kakkis, Jeanne and I pushed the button to change Ryan’s life forever,” Mark Dant told TODAY. Ryan was one of 10 children to participate in these clinical trials.
Five years later, the drug used in the trials, aldurazyme, would be approved by the U. S. Food and Drug Administration to treat most individuals with MPS 1. “We had great results in the first 10 patients. ... After only a few weeks we could see their livers and spleens were shrinking, and they started feeling better,” Dr. Kakkis said.
Twenty-two years later and 34 years old, Ryan still receives this life-changing medication once a week for four hours. It has enabled him to live a normal life, graduating from high school and college. He now has a job and has married the girl he loves. Ryan says that though there are still some medical challenges, he doesn’t allow the disease to hold him back, and he wants to live life to the fullest.
Permanent Cure
It is so natural to want to live life to the fullest. But life is so short and brief, whereas eternity is forever! God says, “It is appointed unto men once to die, but after this the judgment” (Hebrews 9:2727And as it is appointed unto men once to die, but after this the judgment: (Hebrews 9:27)). Those who do not know Jesus as Lord will spend all eternity in hell because “the wages [payment] of sin is death” (Romans 6:2323For the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord. (Romans 6:23)). But God so loved the world (each one of us) that He sent His Son Jesus to die on Calvary’s cross for our sins. “Christ also hath once suffered for sins, the Just for the unjust that He might bring us to God” (1 Peter 3:18).
Although there is still no cure for MPS 1, the drug aldurazyme has changed many lives for the better. Much more research needs to be done. Dr. Kakkis credits the work of many scientists who worked with him on the project and made things happen. It is his desire to continue the work and save many more “Ryans” that are out there. He remains close to the family, attending every big event in Ryan’s life. “Without Dr. Kakkis, I wouldn’t be alive,” Ryan Dant said.
There may be no perfect cure for MPS 1, but there is a cure for our sins and a way to be made right with God. It is putting our faith and trust in the work that Jesus did on the cross for our sins. Because He was perfect and sinless, God accepted His sacrifice on the cross for our sins. “Believe on the Lord Jesus Christ, and thou shalt be saved” (Acts 16:3131And they said, Believe on the Lord Jesus Christ, and thou shalt be saved, and thy house. (Acts 16:31)). Have you repented of your sins? This means to agree with God that you are a sinner and to receive His forgiveness for your sins. Then, by faith, accept God’s gift of Jesus’ death on the cross for your sins. “The gift of God is eternal life through Jesus Christ our Lord” (Romans 6:2323For the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord. (Romans 6:23)).