Around the Park: Zac Johnson's transplant a success; family home in SP after 15 months

The saga of little Zachary Johnson's health and his desperate need for a life-saving liver/small bowel transplant captured the hearts of many Severna Park residents as well as thousands from across the globe.

Caring residents visited the family's Web site to check on his progress. Zachary's story also appeared in The Capital.

Zachary was 1 year old and in shock when he was flown to Children's Hospital of Pittsburgh on Sept. 1, 2007, where he and his parents Brian and Deanna of Cape Arthur, and his twin brother, Aidan, took up residence in a rented two-bedroom apartment to wait for the organs to become available.

Meanwhile back home, friends of the Johnsons rallied to help the family. Many of the volunteer efforts were coordinated by Debbie Gill of Severna Forest who gathered donations for their apartment and coordinated a bake sale; helping to raise enough money to keep the family afloat during their lengthy stay in Pittsburgh.

The Greater Severna Park Moms Club held a fashion show. The Mothers of Multiples Annapolis Chapter has supported the family throughout the ordeal and continues to do so by bringing meals for the family. Members of the group joined the Johnsons' neighbors and friends by placing gifts under the family's Christmas tree. Their friendship and those of the other volunteers who have supported them has been more than invaluable, said Brian.

On April 24, organs became available for Zac.

"There were a lot of scary situations during that time and I doubt very much if the little guy would have lasted another two weeks," said Brian. "He was literally hanging on by a string - you could say that we're at the two-minute warning."

Zac and Aidan were born seven weeks premature on July 2, 2006. Aidan went home after three weeks in the Neonatal Intensive Care Unit. Zac wasn't so lucky.

Born weighing 2 pounds, 10 ounces, Zac was diagnosed with necrotizing enterocolitis, also known as short gut syndrome, an invasive disease that attacks and kills the tissues in the intestines.

After several surgeries leaving his intestines disconnected, he had about half of the intestines a normal infant would have and his intestines could not absorb food. Now, after the transplant, Zac has normal size intestines and the ability to absorb food. "All of his plumbing is working fine," said Brian.

His post-transplant recovery still poses some serious issues, said Brian. Zac has weathered infections and the constant influx of antibiotics. A stroke at one point limited his arm movements.

Despite the ups and downs, Brian is confident and looking on the bright side for Zac.

"He has hearing aids for the ears; his motors skills are showing improvements; and constant physical therapy and mental games will aid in improvement for his delayments," said Brian, adding that Zac is growing and sleeping through the night.

"Time is a commodity that is working on our side for once ... Zachary will take each problem one day at a time."

The Johnsons came home on Nov. 5 with a "souvenir" from their trip - Madeline Kate, known as Maddie, was born full term Aug. 14 in Pittsburgh.

The family is now getting back into a new routine. Brian is relearning his way around the greater Severna Park area and has resumed his job search in the computer field.

During Zac's stay in the hospital, Brian visited a library to search for references on the topic of parents living through having a child in need of a transplant. When he couldn't find anything relevant, he wrote his own book titled "A View from Bed 15," which, according to an excerpt is " ... a story of two journeys. ... One is of Zachary's dire need for a liver and bowel transplant while the other is of how his parents left their comfortable lives in Maryland behind and relocated to Pittsburgh to be with their twin sons.

"It is a story of unconditional love, hope, and the day-to-day insights that his parents experienced during the process.

"The journey was lined with stress, fear, and surprisingly an abundance of humor. It tells of how a family dealt with insurance issues, relocation problems, and hospital cafeteria food, all while keeping a family and a marriage together.''

''It is extremely nice to have the whole family under one roof," said Brian. "The Zac saga was rough, a lot of emotional highs and lows but in the end it all worked out."

The Johnsons' Web site, www.CotaForZacJ.com, was a conduit between Zac's constant battles and the enormous number of people visiting the site for updates.

The traffic on the site showed an average of about 7500 unique visitors each month. The family received e-mails from across the country. "He had a lot of people pulling for him," said Brian. "Considering where he's come from, I wouldn't have wished for a better outcome."

"Thankfully the book is selling well," he said. The book is $15.95 and available at www.booklocker.com or visit www.bed15.com for more information.

The Severna Park Middle School Silent Auction is set for 7:30 p.m. March 7 at the Severna Park Elks Lodge. Tickets are on sale Jan. 15.

Organizers are seeking donations of merchandise and services for the auction which drew 275 people last year. Donations such as gift certificates and weekend getaways are considered a SPIRIT award and the business will be listed in the event program.

A maroon sponsorship is a donation of $250 which will include two tickets to the auction, your company or business listed on the maroon honor roll and an advertisement in the program.

A gold sponsorship is a donation of $500 or more will include two tickets to the auction, reserved seating, special recognition given at the auction, your company or business listed on the gold honor roll, and an ad in the program.

For more information, contact either Lisa Smith at SPMSauction@gmail.com, or at 410-703-6318; or e-mail Sue Dobyns at Sdobyns@comcast.net.

E-mail your Severna Park news to lhunt@capitalgazette.com or 410-280-5944.