When Keller was a couple of days old he had a swollen vertebra that was very prominent on his back. We carried him to a specialist who thought it was inflammation from lack of padding on his car seat. As he has grown-up, his spine has started to curve, prompting us to seek further medical advice. We took him back to see the specialist and he was diagnosed with kyphosis (curvature of the spine). The doctor wanted to run genetic tests to see if there were any underlying issues that would cause this skeletal dysplasia. The tests results came back diagnosing Keller with a rare genetic disease called mucopolysaccharidosis, otherwise known as MPS. He specifically has MPS IV(A) which has a wide range of symptoms that vary in severity. Mucopolysaccharides are chains of sugar molecules used to build tendons, bones, cartilage, and other connective tissues in the body. The body constantly replaces used materials and breaks them down for disposal. MPS IV patients are missing an enzyme essential to breaking down the mucopolysaccharide keratan sulfate. These materials remain stored in the body’s cells, causing progressive damage. . Fortunately, there is treatment for MPS IV(A) in the form of enzyme replacement therapy (ERT), but this is by no means a cure. ERT is a 5 hour long weekly IV treatment that only slows down the progression of the disease. Finding more substantial treatment is critical for Keller and MPS patients around the world. All donations made in Keller’s name will go to research for a cure.
In our opinion, spirituality is just as important as medical treatment, therefore keeping faith that God has a plan for Keller is paramount. We need not to look at Keller and his special condition as a negative situation, rather as an opportunity for us to draw closer to God and harness His strength and love to give to Keller. Everyone in this world suffers, so it is not what you suffer, but how you respond to suffering. Positivity is contagious, and we want to spread that message to everyone who touches Keller’s life. It is our job to make Keller feel loved and that this condition does not hold him back. Please keep Keller and all families effected by MPS in your prayers. Please pray for a cure and do not hesitate to pass this prayer requests on to others. Prayer is very powerful, especially in mass numbers.
“For I know the plans I have for you, plans to give you hope and a future.” Jeremiah 29:11
See Keller’s CaringBridge page here.