Since June 2016 we’ve been making frequent trips to Stanford Children’s Hospital. Not knowing exactly what was going on with our little guy, these appointments consisted of blood tests, x-rays and many visits with different specialists. It all began when we noticed weakness in Christopher’s back and the way he would walk with his arms outwards. We thought, maybe this is just the way he walks and maybe his back isn’t as strong as it should be because he was born 3 1/2 weeks premature. It took a family member to mention to us that we should get it checked out. At first Christopher’s family doctor couldn’t figure out what was wrong. He said it was related to Christopher being born prematurely. Luckily another doctor saw Christopher and ordered x-rays for him because he suspected something else may be happening. This doctor referred Christopher for additional testing.
At Stanford hospital they performed a series of tests on Christopher.
On November 9, 2016 our lives changed forever. We received Christopher’s final diagnosis of MPS IV type A, also known as Morquio Syndrome. This is a rare genetic disorder that affects many parts of the body. It can affect his bones, joints and heart. This condition is caused by an enzyme that is not being produced in Christopher’s body. This enzyme is needed to effectively break down a protein called Glycosaminoglycans or GAG. If these proteins are not broken down, these proteins can build up on different parts of the body which can lead to serious damage on his body.
MPS IV type A is a progressive disorder which can get worse over time and there is no cure for this condition. This was something very difficult to hear from the doctors. Not knowing what the future holds for our Christopher many questions started to run through our minds. Will he live a normal life? Is this going to be painful for him? Will he be able to live a long life?
This is every parents nightmare, but we have seen how strong Christopher has been through this whole process. We also see a boy full of life, happiness and joy in him. With his strength and happiness he has given us strength and given us faith that there will someday be a cure for him. He has made us turn this whole process from something negative to a positive. The good news is there is preventive treatment available for this disorder that will hopefully help prevent protein build up and help him with his everyday life. This treatment is done weekly and is called ERT or Enzyme Replacement Therapy which is an infusion of the enzyme that Christopher is not producing.
We have decided to go through with this treatment and we have faith this treatment will help Christopher. I’ve created this page in hopes to raise awareness for this genetic disorder and also a place where one can donate to help find a cure for MPS IV and related diseases. Every donation counts and will help change the lives of not only for Christopher but for many families that are also going through the same difficult process.
If you would like to find out more information about this disease and this organization, please visit mpssociety.org
International MPS Awareness Day:
Please help us honor Christopher on this day by wearing Purple and
or by making a contribution.
100% of the donations will go directly to the National MPS Society to support MPS IV Research.
Thank You for visiting Christopher’s Page
“I am strong like Hulk!” – Christopher Sanchez
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