Benefit comedy show to be held Friday

Maggi Blair is a special little girl. The 17 month old daughter of Fayetteville residents Patrick and Donna Blair, was diagnosed with a rare genetic disorder in June 2006. It is Maggi’s sweet smile and gentle temperament, however, that make her truly special.

From the beginning, Donna and Patrick knew Maggi was a miracle baby. Donna was told she would likely never be able to conceive, but after less than six months of marriage they discovered they were going to have a baby.

After a relatively easy pregnancy, Maggi was born in April 2005. “When she was born, her head had swollen some and she was stuck...and we could tell that [on one side of her head] something didn’t look right, but we just thought it was because she had been stuck,” said Donna.

Maggi was born with a low birth weight and had issues feeding, which put her into the neonatal intensive care unit (NICU) for three weeks after birth.

On the day Maggi was discharged from the NICU, the neonatal specialist told the Blairs that he would give them the contact information for a plastic surgeon they needed to take Maggi to.

“I said, ‘What for?’” remembered Donna. The specialist informed the Blairs that Maggi’s misshapen head was not a temporary effect from birth, but rather a physical deformity.

“That was kind of hard to take,” Donna said. “We got her home, that was just a nightmare because she would choke and she didn’t know how to eat, and what do you do, we didn’t know what to do.”

When she was a month old, the Blairs took Maggi up to Scottish Rite Hospital where the doctors told them Maggi had craniosynostosis, a premature fusion of one or more cranial sutures, often resulting in an abnormal head shape.

When she was four months old, two surgeons performed a craniotomy on Maggi to fix the deformity she was born with. After a three day stay at the hospital Donna and Patrick took their little girl home. “When we got her home, she did great...she seemed to open up more developmentally then too,” Donna stated.

The next bump in the road came at six months with the realization that Maggi’s back was curved, she was diagnosed with scoliosis and the Blairs were told to bring her back for a twelve month follow-up. “It seemed like overnight it just went crazy,” recalled Donna. “We took her to the orthopedist and found out that she had a tethered spinal cord, which was causing her spine to curve more and more progressively.”

On February 13, 2006, Maggi underwent surgery to release her tethered spinal cord. Only days after being released from the hospital, Maggi was readmitted after it was discovered that she had contracted rotavirus while while in surgery. Three days into their stay, the doctor informed Donna and Patrick that he had been doubtful whether Maggi would pull through, but that she had stabilized and would make it. Maggi spent 11 days in the hospital.

“When we took her up and found out about the craniosynostosis, they went ahead and ordered blood-work and everything came back normal, no syndrome...but we kept going through all these health crises, it was like ‘there’s got to be a bigger picture to all these little incidents,’” noted Donna.

They were right. In May, new banding testing became available for gene mutations and the Blairs took Maggi in to be tested. The results showed that Maggi was one of just over 30 known cases of Trisomy 9 Mosaic Syndrome to be diagnosed since the 1970s.

In June, Donna and Patrick received genetic counseling. “She explained to us, that all the little things about Maggi, all the little things that we didn’t notice, that we just thought she must have gotten that feature from a distant, distant relative [were symptoms of Trisomy 9],” said Donna.

According to www.trisomy9.com, “Chromosome 9, Trisomy Mosaic, also known as Trisomy 9 Mosaicism syndrome, is a rare chromosomal disorder in which the entire ninth chromosome appears three times (trisomy) rather than twice in some cells of the body. The term ‘mosaic’ indicates that some cells contain the extra chromosome 9, while others have the normal chromosomal pair.

“Associated symptoms and findings may vary greatly in range and severity, depending on the percentage of cells with the extra chromosome. However, common features include growth deficiency before birth (intrauterine growth retardation); mental retardation; structural malformations of the heart that are present at birth (congenital heart defects); and/or distinctive abnormalities of the skull and facial (craniofacial) region, such as a sloping forehead, a bulbous nose, short eyelid folds (palpebral fissures), deeply set eyes, and/or low-set, malformed ears.

“The syndrome may also be characterized by musculoskeletal, genital, kidney (renal), and/or additional physical abnormalities. Chromosome 9, Trisomy Mosaic may be caused by errors during the division of a parent's reproductive cells (meiosis) or during the division of body tissue cells (somatic cells) early in the development of the embryo (mitosis).”

While Maggi has been subject to some of these symptoms, such as low-set, asymmetrical ears and other physical deformities as well as delayed mental development, she has not suffered some of the more severe medical issues such as heart or kidney problems. Usually it is these problems that cause premature death in children diagnosed with Trisomy 9 Mosaic.

Testing showed that, of 300 cells tested, only 16 percent had the genetic abnormality in Maggi. While Trisomy 9 Mosaic Syndrome typically means a short life expectancy, Maggi has the lowest known percentage of affected cells, and it is impossible to determine how long she will live.

“We just know that she is 84 percent normal!”

For as long as Maggi is alive, whether it be one more hour or 80 more years, the Blairs plan to treasure the time they have with their little girl.

In order to be available as her primary caregivers, the Blairs teamed up to start Blair Productions, a multi-service company that can provide everything from video services to personalized cakes. This allows the Blairs to take Maggi to her many doctors appointments while still paying the bills, a difficult task for any family with a special needs child.

Throughout the past 17 months the Blairs have faced many challenges and setbacks dealing with both the healthcare system and insurance companies. Currently Maggi is waiting to be fitted for a brace that will keep her scoliosis from getting any worse and, hopefully, will enable her to walk. With the current changes within Medicaid, the Blairs are having a difficult time getting their insurance to pay for Maggi’s brace.

The Blairs understand that they are not the only family to face the hardships of dealing with a medically fragile child, and they hope to help others who are facing similar problems through The Maggi Blair Foundation.

“The day that we got her diagnosis...I came home and fell apart,” recalled Donna. “The next day I got up and...it just hit me like a ton of bricks. Number one, I know how to use my resources, I’m used to giving and what better way to honor Maggi while she’s here, and to show her strength is to do it through the foundation and help these other parents.”

Patrick Blair notes that help from the foundation will not be limited to those with medical ailments as serious as Maggi’s but rather as a source of help for anyone with a special needs child who is seeking financial relief from the burden of medical bills.

To that end the Blairs have organized their second benefit comedy show to raise funds for The Maggi Blair Foundation. The show will be held this Friday, October 13 at Loco’s Deli and Pub in Fayetteville.

The night will feature Laughing Matters, Atlanta’s longest running improv comedy troupe, as well as Gary Anthony Williams, a former member of the Blue Collar Comedy group and current cast member on the ABC drama “Boston Legal.” Williams is a long time friend of Donna’s and a Fayetteville native. He graduated from Fayette County High School and was a successful actor in Atlanta before packing up his bags and moving to Los Angeles, California.

Williams has been featured in television shows such as “Malcolm in the Middle,” “The Boondocks” and “Blue Collar TV” and has also been seen in films such as “Soul Plane,” “Harold & Kumar Go to Whitecastle,” “Undercover Brother” and “End of Days.”

Just recently Williams was offered a three year contract on “Boston Legal” where he joins an all-star cast including James Spader, Candice Bergen and William Shatner.

The evening will feature a clean comedy show that the whole family can enjoy, great food and an auction between sketches.

Items to be auctioned include tickets to Agatha’s Mystery Dinner Theater, original artwork by local artists, gift certificates to local restaurants, a portrait by Images by Rainy, autographed DVDs of Gary William’s work and an autographed picture of Maggi from Williams and the cast of Laughing Matters.

The Blairs are still seeking donations for items to be auctioned. If you have items to donate, please call Donna at 678-817-4847.

Tickets to the show are $20 and can be purchased by calling 404-225-5000. Tickets may also be purchased at the door, but are not guaranteed seating. Attendees are asked to get to Loco’s by 8:30 and the show will begin at 9 p.m.

All proceeds from the night will go to the start up of The Maggi Blair Foundation.

What keeps the Blairs going is the love and support they have received from their friends and family.

One of the people who has offered a tremendous amount of support is Rainy Chastine, owner of Images by Rainy, and her family: husband Todd, sons Gray and Colton and daughter Summer, who was recently adopted from Russia.

Rainy has become the Blair family’s official photographer, capturing Maggi’s many changes in her journey through life. More than just a photographer, she has been a friend and a support system for Donna and Patrick.

“Through everything, the only way we have been able to survive is, first off, through our family, and then there’s a lot of people in Fayetteville and around Fayetteville that have helped us out a lot, and our church, we go to McDonough Road Baptist Church, and that is one of the most supportive church families I’ve ever known in my entire life,” said Patrick. “They are just some of the sweetest people. If wasn’t for all that and our faith in God, we wouldn’t be able to do it.”

Maggi has also been chosen as a recipient of the newly formed charity started by the Car Guys, www.charityclubcard.com.

If you would like to learn more about Maggi, Trisomy 9, The Maggi Blair Foundation or Blair Productions log onto www.blairprod.com/maggi where you will find links to all the above mentioned.

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