Young Girl WIth Hirschprung’s Disease Inspires with Smiles

by Ryan Shaffer

Imagine a crisp, sunny spring day with colorful flowering erupting from the Earth during first bloom. The sun beams softly onto them as they awaken from their lengthy winter hibernation, and the effervescent dew gleans on the bright petals. Ellwood City’s Nan Beachem gets to enjoy that same warm feeling everyday when she sees her daughter Kyree’s captivating smile.

Twenty-four years ago, Beachem began her commitment to altruism when she and her then-husband started fostering newborn children until adoption became available. It took little time for the two to move on to older children who needed transitioned from unstable home environments to loving and supportive ones. In all, they took in 86 foster children, and adopted five, all while caring for their four biological kids. Beachem, now a single mother, currently cares for two adopted children which were born with the same ailment, Hirschsprung’s disease, also known as short-gut disease, which affects the intestinal tract. One of those children is seven-year-old Kyree.

“Kyree was in the hospital in Texas for the first two years of her life,” Beachem explained. “She was brought to Pittsburgh for fostering because Children’s Hospital is the leader for the transplant that she requires. She was placed with our family because she had the same medical needs as her brother, Nico. We adopted both of them. He is fifteen months older than her, so they are very close.”

Three years ago, Nico successfully received a life-altering transplant isolated to his small bowel. After spending the first five years of his life connected to feeding tubes and IVs, he can now enjoy meals with a bit of normalcy with no bouts of rejection thus far. He also attends school at North Side Elementary.

Kyree, on the other hand, continues to wait for her transplant. Her first transplant in 2010 failed due to a bodily rejection. At the end of October, she was pulled from James Potts’ second-grade classroom due to complications caused by her illness.

“She’s on the top of the list,” Beachem said of the Kyree’s status with the transplant list. “Her blood-type and body size are taken into play. Because it has taken so long, she now needs liver, small bowel and pancreas transplants. She attended school full-time, but had a couple of illnesses lately, and her liver is really failing, so I needed to pull her out. I need to keep her as healthy as possible.”

The young girl wears a constant smile, even though she also wears a backpack full of IV fluid for 20-to-22 hours each day. A committee of nurses from Interim in Pittsburgh comes to Beachem’s Aetna Drive home daily to provide extended care for Kyree. Her doctors believe that without a transplant in the next 3-to-6 months, hospitalization will be required.

“She can’t even get a cold at this point,” Beachem added. “If her transplant comes through, and she has any sign of illness, they will pass her over because the chances of rejection will greatly increase. I’m afraid to get too excited even when things do go well. She can change from happy and giggling to being sick within an hour. I can’t let my guard down.”

Beachem recently cut back on her shifts at Log Cabin in Harmony to spend more time at home caring for Kyree. In 2006, she dealt with a similar situation when she lost her adopted daughter, Tessa, to mucopolysaccharide (MPS), a rare genetic disorder that causes organ damage.

“We took her in when she was four-months-old, and she passed away a month after her seventh birthday,” Beachem said of Tessa. “She was diagnosed with a terminal illness when we adopted her. One thing I learned is that time is more important than money. You can’t get that time back.”

While insurance covers all of Kyree’s medical expenses, her co-worker and close friend, Nicole Dausman, wanted to ensure that finances did not cause added stress to an already taxing situation.

“Kyree just draws you in, and you can’t help but love her,” Dausman explained. “My step-daughter is seven, so we had them get together one day and they became the best of friends. Then, Nan and I became the best of friends. I can’t watch her struggle without doing something. Things come up, and something you can’t be at work. And, she’s doing it all by herself, and it’s not fair. There is enough stress with the kids every day. I can’t watch her struggle without doing something. I want to do whatever I can to make [Kyree] smile.”

Dausman created a GoFundMe account so that the community can help support the Beachem family when Kyree received the transplant. During that time, Beachem will need to take a leave of absence from work to stay with her daughter, thus generation of income will cease for an extended amount of time. Dausman named the account to honor the organ donation’s slogan, “Gifts of Life.”

“We’re calling it ‘Kyree’s Gifts of Love,” Dausman added.

As Kyree and mother continue to fight this illness together, Beachem wants to ensure that everyone in the community recognizes that others also suffer from similar circumstances. Lori Hannon and Lauri Debelak, owners of Perpetual Childhood, took that information into account as they plan to hold a month-long donation drive in Kyree’s honor.

“I met Kyree in October at her friend’s birthday party, and we instantly became friends,” Hannon discussed. “She showed up with a nurse who explained how sick she was, and I noticed that couldn’t eat anything with gluten. She told me she liked to dress up, so I invited her to the store to play dress-up since we have the clothes. I knew Nan from high school and when she worked at Posies by Patti, so when I found out it was her daughter I reached out.”
Beachem became overwhelmed when all of the people who know Kyree started showering the family with support.

“I don’t have words,” Beachem said of the generosity. “Her classmates sent her a book [The Velveteen Rabbit] and they all signed it. And, to have others take time out to benefit other families…I’m unbelievably touched.”

Kyree continues to smile and embrace each day. She spends her time watching her favorite movies, Tinkerbell and Frozen, and “cuddling up with mommy.” She can’t wait to return to school and play with her friends. Further, she intends to one day play softball and become a cheerleader so she can wear her uniform to school.

Beachem explained that life with Kyree has been an “absolutely wonderful roller coaster ride.”

“It’s a roller coaster,” Kyree said. “Just not the Jack Rabbit. I don’t like the Jack Rabbit.”

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In order to support Kyree’s GoFundMe campaign, please visit the account at www.gofundme.com/kyree
Perpetual Childhood is hosting a donation drive from now until Dec. 20. Signage for the event will be donated by The Color Center. New, unwrapped toys and money will be accepted. Checks should be made payable to “Perpetual Childhood.” Once the drive is complete, Lori Hannon will escort Kyree to Children’s Hospital to deliver all of the toys to sick children, and the money will be donated in Kyree’s honor. For more information, visit Perpetual Childhood at 506 Lawrence Ave., call 724-752-2024, or contact the store via Facebook.