www.caringbridge.org/visit/eddiekImagine someone telling you that your child will live a life of struggles and pain, that every day you will watch you child slowly deteriorate. They also tell you that this degenerative disease will shorten their life span and will cause their bodies damage in every organ including the bones, eyes, ears, heart, and lungs, and by the age of 10, they will most likely be in a wheelchair. Then they tell you that there is no treatment or cure so there is nothing to do but watch.
8 years ago that is what Brad and I heard when Eddie was diagnosed with MPS IVA or Morquio Syndrome. There was no way as parents we would accept that as an answer.
The National MPS Society has been a blessing. They work endlessly to get treatments for the rare MPS diseases. The National MPS Society is comprised of professionals, doctors, researchers, and families all striving for the same goal…to save the lives of our children.
Eddie’s Story: Eddie is 10 years old and in 4th grade. He has been getting weekly 6-hour infusions in Chicago for the last 2 ½ years. This Enzyme Replacement Therapy should hopefully slow the progression of the disease (not cure it). The ERT has recently been approved by the FDA thanks largely in part to the MPS Society and its members. Eddie has endured 14 surgeries in his 10 years of life. These included cervical fusion/ spinal decompression (twice) and bilateral hip, knee and ankle surgery which consisted of a spica cast for 6 weeks when healing. He is currently not walking and has daily pain.
The MPS Society is a voice for Eddie and his family. It is a place to connect with the few people that know what we are all going through. They are our advocates. They are our hope.
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The mission of the National MPS Society is to fund research and provide support for families affected by MPS and related diseases.
Please help our family and support the National MPS Society. Every donation will make a difference in the lives of those affected by MPS and related diseases. Please visit www.mpssociety.org for more information.