For the Packer family of Middleboro, this past summer was a whirlwind of shocking news, medical appointments and anxiety about what the future holds for their infant son, Brayden.

For the Packer family of Middleboro, this past summer was a whirlwind of shocking news, medical appointments and anxiety about what the future holds for their infant son, Brayden.

“June 26, 2008, was the worst day of our entire lives,” said Erin Packer, Brayden’s mother.

On that day, the Packers found out that Brayden, now 9 months, was diagnosed with a rare disorder that impacts only one in 200,000 children.

 “I received a call from the dermatologist’s office that Brayden had a biopsy at a week prior,” Packer said. “ …The doctor explained to me that Brayden had Langerhans Cell Histiocytosis and that it was a rare blood disease. I cannot remember much about the rest of the call but his words after the name of the disease play in my mind over and over again. He said that we would have to take Brayden in to see an oncologist/hematologist. When those words came out of his mouth, my heart just crumbled.”

The months that followed included trips to the Dana Farber Institute in Boston, extensive tests at Children’s Hospital - which included 28 X-rays - as well as blood work and urine screens.

Packer said she and her husband, Bobby, found the X-ray procedure among the most difficult.

“This process was heart-wrenching for Bobby and me because we had to physically hold him down and he screamed the entire time,” she said.

The good news, however, was that the other tests came back negative, and the couple’s son had LCH contained to skin lesions at this time.

Brayden’s aunt, Sharon Stone, is helping to organize a benefit in West Bridgewater to raise awareness about the condition and assist the family with rising medical expenses.

“LCH gets no government funding for research because is affects so few people,” Stone said.

The condition, she said, can progress to impact bones, organs, and blood, beyond the initial skin lesions.

“At first the rash looked like cradle cap or maybe eczema,” Stone said.

Treatment creams had no impact on Brayden’s skin. The rash-like scales spread from his head to his back and stomach. 

Erin Packer works as a sales assistant for a life insurance company in Bridgewater. Though the company has granted a lot of time in unpaid leave, the situation gets costly as medical bills mount.

“Juggling all these appointments and traveling to see a specialist in Texas… all the unpaid leave gets expensive,” Stone said. “Some bills aren’t covered, and when there’s an appointment she also loses her pay for the day.”

The disease can wax and wane and have flare-ups at different times, but the family is hopeful, Stone said.

“My goal is I believe it will go away and his body will get through this,” she said.

The funds from the benefit will go toward the current bills, and be saved if a recurrence occurs.

“If it doesn’t come back,” Stone said. “we’ll give whatever money is left to research for the disease so other children won’t have to go through what Brayden went through.”

She also hopes parents may learn from the story.

“Most important to me is that maybe parents will read this and not brush off a rash,” Stone said. “Erin followed her motherly intuition and was persistent. She knew something was not quite right.”

Packer added that Brayden’s brother, Tyler, 7, also has been impacted by the disease battled by his little brother.

“I was nervous while I was pregnant how Tyler would react to having a sibling because he did not have to share our attention for 6 ½ years,” Packer said. “Tyler is the best big brother to Brayden. He loves Brayden so much and is always trying to make him laugh or smile... I catch him often looking in the rear view mirror singing to Brayden… He makes all of these funny faces while singing so he laughs.

“As devastating and scary Brayden’s diagnosis was for Bobby and me, it was equally scary for Tyler. Not only was he having to share our attention with his new brother but now he found out that he is sick. At diagnosis he knew that there was something very wrong because he saw all of us crying. It is hard to explain to a 7-year-old in terms that he can understand that his brother is very ill.”

“It’s been quite the learning experience for Erin and Bobby, and stressful for everyone,” Stone said.

For Packer, the upcoming event really will assist the family.

“The fundraiser is going to help our family tremendously,” Packer said. “Since Brayden’s diagnosis in June, every day that I have had to take off for appointment, because he is not feeling well, and to travel to Texas for a second opinion were all unpaid. The money raised will help pay for uninsured medical bills, co-payments, gas for travel into Boston, parking and other bills that accumulated due to unpaid time off… Bobby and I grateful for all the people who have helped organize and make this fundraiser a success.”

The benefit will be held Saturday, Nov. 1, at 7 p.m. at the Canoe Club Ballroom, 2 South St., West Bridgewater. The event will include an auction, raffles, 50/50 raffle, food, and a cash bar. All proceeds will help Brayden’s parents offset medical costs and support research for this rare condition.

Tickets are $25 in advance or $35 at the door.

Checks should be made payable to the Brayden Packer Fund and may be dropped off or mailed to Citizens Bank at 755 Bedford Street; Winter Place; Bridgewater, MA 02324.

West Bridgewater Times