Part 2 of 2
Muscular dystrophy is a degenerative disease, characterized by progressive atrophy and wasting of muscles. It has no cure. Denise Montgomery and her daughters Alexis, 12, and Josey, 9, all have the disease.
Even though Denise had some mild physical difficulties as young as 8, she wasn't actually diagnosed with MD until she was in her 20s and Alexis was born. The disease didn't bother her much until after the birth of her two children. Now she has little coordination and balance and has severe weakness in her lower back.
There was a 50/50 chance her children could inherit the disease. Denise knew both daughters had it without a doctor's diagnosis. As infants, they slept with their eyes open.
Alexis, was officially diagnosed when she was about 5 or 6. Most of her symptoms, weakness in her face, shoulders and hips, didn't show until she was seven.
The thin blond headed North Clay Middle School 6th grader has a very healthy attitude and a lot of spunk. She refuses to give in to the physiological intruder.
Alexis's muscle tests show her degree of weakness is such that it would put most people in a wheelchair. Ambulation is difficult and tiresome for her. But she insists that she be allowed to use the stairs at school instead of the elevator. She's determined to stay independent and just wants to be normal like the other kids.
Josey, an East Side Elementary 3rd grader, shows symptoms, like her mother, that effects mostly the right side. Her symptoms surfaced at an earlier age than her mother and sister and seem to be progressing more rapidly. It is extremely difficult for her to walk and very tiring.
At school and in stores where they're available, Josey uses a wheelchair. She rides to school in the handicap accessible bus. She does not yet have a regular wheelchair or a motorized wheelchair at home.
The $18,000 motorized wheelchair will be paid for, 80 percent, by Hoosier Healthwise Insurance. The remaining 20 percent will be picked up by the Muscular Dystrophy Association. But Denise has been jumping through medical hoops for the past six months and thus far has been unable to acquire the much needed, customized, motorized wheelchair for her younger daughter.
Denise got a prescription from Josey's Indianapolis physician, Dr. Pappas, for the wheelchair in April. She took it to the recommended medical supply company. There she was informed that the prescription had to come from a Dr. Carbone. Dr. Carbone's office told Denise that the doctor did not do pediatrics and she'd have to go to a Dr. Carpenter. Dr. Carpenter's office told her they only took new patients by referral. She would have to have Dr. Pappas call in a referral.
Things may be changing. Denise got a message from the MDA office last week telling her to take Josey to Methodist Hospital Nov. 9, for evaluation and measurements for the wheelchair. Denise is trying to make personal contact with the caller to get more specific information. She doesn't know what to expect but is encouraged.
Even when she gets the wheelchair, it will be of little assistance without the van. The MDA will fully equip the van to make it handicap accessible. They will not purchase the vehicle.
Denise said the prognosis with MD is a normal life span but obviously with varying degrees of physical limitations. The physical activity she misses most is roller skating.
"But I'm happy I'm alive," she said. "And I'm happy both my children are alive. I'm disappointed that it happened to us and we don't lead a normal life. But I have my own home and my own car and we're relatively healthy. Their dad and I are divorced but he is a very good daddy. He's active in the girl's lives and very helpful to me.
"Actually, we're very fortunate really," Denise continued. "Life could be worse. I don't care so much for myself, but I would love to see a cure for my kids."
Lots of projects have already been done by the community, North Clay students and Clay Community staff to help the Montgomerys raise money for the van. The big fundraiser, however, is a Carnival from 6-8 p.m. Friday at the North Clay Middle School Common area. Organizers hope to raise $10.000. All of the proceeds will go to the Montgomery family. Tickets are available at all Clay County schools at five for $1 or they can be purchased at the Carnival, four for $1.
Anyone can contribute to the cause. A trust fund has been established and donations can be made to: Montgomery Family Fund, First National Bank & Trust, 103 West National Ave., Brazil, IN, 47834