Meridian Star

Local News

October 8, 2012

Cherishing each day

Family copes with child’s rare, fatal disease

MERIDIAN —  

    Madden Maple is throwing little rubber balls against the dishwasher in the Maple's home.

    For some reason, his little brother, Archer, 2, thinks this is just hilarious. His laugh is contagious. It is one of those laughs that comes from the soul of a person who hasn't a care in the world. Madden, 4, loves making his little brother laugh.

    It is a day in which the older brother will likely remember for years to come — later years he may not be able to share with his little brother.

    Archer has a rare, incurable and fatal condition that is in the group called peroxisomal biogenesis disorders (PBD). As the children's mother, Ashley Maple, talks on the phone, the boys busy themselves with having a good time.

    Ashley Maple can only smile at her two boys. She knows these times are all the more special because of what the family is facing.

    "It is not easy to not feel down every day," Ashley Maple said over the phone. "I wish I could trade places with him but I can't. But we can, as a family, make every day a special one."

    Under the peroxisomal disorder group there are several subgroups of conditions that can occur. Archer's condition falls under the Zelwegger Spectrum Disorders, which are inherited through each parent carrying one mutated gene. A child born to parents who are both carriers of the gene has a 25 percent chance of receiving mutated genes from each parent.

    "If Archer has a peroxisome disorder, it would be because my husband, Ryan, and I are both carriers," Ashley Maple said.

    Ryan Maple is a captain in the U.S. Marine Corps and is a flight instructor at NAS Meridian. In addition to the boys, the Maple's have two girls, Sophie, 8, and Lydia, 6.

    Test results show Ryan and Ashley Maple's three other children are healthy and normal — blessings for which the couple are thankful. At the same time, they are also thankful for Archer. He is a blessing of a different kind.

    In response to their son being diagnosed with a PBD, Ashley Maple has formed a fundraising benefit to help research into the disorders. Ashley Maple said there are no clinical trials being conducted to try and address the fatal condition. Through the Global Foundation for Peroxisomal Disorders, Ashley Maple hopes her event, "Art for Archer" will help raise money that will launch serious research by passionate medical professionals into this area of human health.

    Art for Archer will be held Oct. 20 from noon until 4 p.m. at Dumont Plaza in downtown Meridian. Admission is $5 for those age 3 and older. The event will feature demonstrations by local artists like Dana Casey, Bebe Gianakos and Karen Rooney. There will be arts and crafts for sale and children will be able to make their own works of art at four different arts and crafts tables.     There will be a bounce house, bake sales and raffles. All proceeds of the event will go to the Global Foundation for Peroxisomal Disorders.

    "The response has been great so far and we look forward to more people getting involved," Ashley Maple said. "A lot of the artists will be local but there will also be several from out of the area who are donating their time and energy toward this event."

    Even a family from Oklahoma whom the Maple's met earlier this year in Florida during a family conference on peroxisomal disorders will be attending.

    But the star of the event will likely be Archer.

    After months of testing, Archer was diagnosed with (PBD) in March 2012. This spectrum of fatal diseases damages the white matter of the brain and affects motor skills. Archer needs regular monitoring to watch his kidney function and vitamin K levels. Ashley Maple said Archer has a milder form of PBD and where many infants who get this disorder usually live only about 2 years, Archer may live to be around 10.  

    Ashley Maple admits to not thinking about the future very much. Instead she and the rest of her family concentrate on the here and now. She said she refuses to find any less joy in Archer than if he were perfectly healthy.

    "My son is happy. He plays peek-a-boo and patty cake. He loves his siblings. If you find the ticklish spot on his chest you won't be able to resist laughing along with him because his laughter is contagious," Ashley Maple said. "He can't crawl or walk, but he can scoot on his behind, and I want to scream 'Look at what my son can do! Do you realize how hard that is for him? Just look at him!'"

    The Maple family doesn't know what lies ahead. All they care about is that they have their sibling, their son, here today.

    The name Archer was actually one of the possible choices for the Maple's first son, Madden. When Ashley Maple was eight months pregnant with their second son they decided to name him Archer. The middle name was a little more troublesome but Ashley Maple's mom suggested one that would prove especially appropriate — Matthias.

    "It means 'gift of God,'" Ashley Maple said. "Through our tears and on our knees, we thank God for the gift of our son, no matter how long we are given him."

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