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.



BLOOD DRIVE TO HELP TALON

A blood drive has been set up to benefit Talon as he begins the treatment process.  The blood drive, which is sponsored by the Oklahoma Blood Institute (OBI), will be held June 20 from noon to 6 p.m. at the First Baptist Church, 202 E Hanks Trail.

 "The blood drive is important because in order for the bone marrow transplant to work, they have to first wipe out Talon's immune system and use chemotherapy in hopes that his body will accept the new bone marrow," Morris said.

This immunosuppressant and chemotherapy process takes about a month and during that time he will need blood platelets, according to Morris.

Chemotherapy works by destroying cells that grow rapidly, such as cells in the bone marrow that generate platelets, according to chemotherapy.com. This is why the blood drive is important, so Talon can receive infusions of donor platelets to replace those he may lose during chemotherapy, Morris said.   

For every pint of blood that is donated at the June 20th blood drive, Talon will receive credits through the OBI, which can then be exchanged for the donor platelets he needs.

However, Morris says that they can't even start the process of immunosuppression and chemotherapy until they find a bone marrow match.

The search has already started to find a donor match for Talon in the National Marrow Donor Program Registry, also known as The Match Registry.

You can help with that search by volunteering to be placed on the bone marrow registry.  There will be an opportunity to sign up for the registry at the blood drive on June 20.

Getting on the registry is simple and painless, all that is needed is a simple mouth swab, according to the bone marrow registry website www.marrow.org.

If you are unable to make it to the blood drive and would still like to help, a medical fund has been set up for Talon at all the Bank 7 locations in Woodward.