The Woodward News

Features

June 11, 2012

Local baby needs bone marrow transplant

Woodward, Okla. — Imagine, your young family has just survived a tornado. You are starting to get the pieces picked back up, when you take your baby in for his 9-month check up and get hit with even worse news.

The doctor says your child may have a de-habilitating disease that only affects 1 in 100,000 people.

That is what Becky Morris and Chris Waibel, of Woodward, were faced with one month after the April 15 tornado.

Their son, Talon, went in for a regular baby wellness check up, but his doctor noticed several things wrong.

"She said that he an enlarged spleen and liver, a slight curve in his spine and a heart murmur," Morris said.

Their doctor suggested more tests and that they see a genetic specialist in Oklahoma City.

 "That was on a Tuesday. I then got a call on Friday from the genetics specialist and we went to Oklahoma City on that following Monday," Morris said.

They took Talon to OU Children's Hospital in Oklahoma City to see Dr. Klaas Jan Johan Wierenga, MD, a genetics specialist. Dr. Wierenga ordered more blood tests to confirm, and on May 25th Talon was diagnosed with Mucopolysaccharidosis I (MPS-I), more commonly known as Hurler's Syndrome.     

According to the MPS Society website,  www.mpssociety.org, MPS-I is a genetic lysosomal storage disease caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells, according to MPS Society website.  Without these enzymes the cells do not perform properly and may cause damage throughout the body.  Based on the nature of the disease, signs and symptoms tend to develop as the child gets older and more cells become damaged.

Treatment for this disease includes enzyme replacement therapy and a bone marrow transplant

"We are going to start the enzyme treatments on Tuesday, June 12th at OU Children's and each one is given by IV and takes about 5 hours to complete," Morris said.

These treatments have to be done weekly.  But they only delay the progression of MPS on the organs, according to the MPS Society website.

Finding a bone marrow match early is critical to prevent Talon's condition from progressing into something that could be much worse. According to the MPS Society website, having the bone marrow transplant done early can reduce the risk of mental retardation.

"We think that we have caught it in time that his quality of life will be much greater than those who do not catch this disease early," Morris said.

Prenatal testing is available by amniocentesis between 14 and 17 weeks of pregnancy, says the MPS Society website.  Morris says that she would encourage parents to test for Hurler's so that they can be aware and have a game plan for when the child is born.

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