This is an archived article that was published on sltrib.com in 2011, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.
When Jennifer Howe found out she was pregnant for the second time, she had the usual hopes and dreams for pregnancy, a healthy baby being at the top of the list.
Instead, she was told her child, if he lived, would be "profoundly retarded."
Howe and her husband Blair were encouraged to terminate the pregnancy of the little boy who was diagnosed in utero with Ring 18, a chromosomal abnormality.
"We were told his life was going to end regardless and would have no quality even if he made it to term," Jennifer Howe wrote on her blog.
The Farmington couple had no way to prepare. "You can't. I did not sign up on a roster sheet and volunteer to have my heart torn to shreds," she wrote. "Albeit, life happens, and we get to make choices, choices that ultimately determine our consequences, and choices that allow us to learn, grow and experience worlds we were not aware existed."
The couple decided against aborting the pregnancy, and Deakon Howe, now 5, proved the doctor's wrong by living.
Jenny has made it her quest to raise money for awareness of Ring 18. Deak's Run for Hope is her first major fundraising event, with all proceeds going directly to the Chromosome 18 Registry and Research Society.
"This past December, my daughter initiated doing a tree in honor of Deakon at the Festival of Trees. Our tree was auctioned off for about $3,700 (proceeds went to Primary Children's Medical Center) and that gave us the bug to earn money for the organization that provides the most direct benefit in terms of research for Deakon and his condition," Howe said. "I truly hope to make this an annual event, and am very excited at the possibility of this event growing and growing, if not just financially but for the awareness of Chromosome 18 conditions."
Abby Howe, 8, is her brother's biggest fan and according to her mother, "wise beyond her years." She has been a great help to her family when it comes to raising Deak.
Raising a special needs child is, according to Howe, full of emotional extremes: "Seemingly insurmountable lows and indescribable joy-filled highs I know I would not have had the chance to recognize without his presence."
As for advice she would offer anyone who finds themselves in her situation, she says, "Live life with your child. Let them guide you in the direction they want to head. Give them a break from therapy. Heck, give yourself a break, and take them to McDonald's. You will become stronger than you ever thought possible, spout off more medical terminology than most first-year residents, and experience love to a degree not imaginable by most. Take time for yourself, for your significant other, and for your other children.
"And, expect the world for your child, because if you will, they will expect the same for themselves." —
Deak's Run
When • May 14
Where • Snow Horse Elementary School, 1095 W. Smith Lane, Kaysville
Start • 8 a.m.
Cost • $25 until May 7; $35 after May 7
Information • bit.ly/hlXRhI