Lily and her cute chubby cheeks
Her Story

The Life of Lily Katharine Harper
Eulogy given in American Fork, UT
by Sarah Robinson, MaryBeth's sister

On the evening of March 19, 2002, Lily Katharine Harper was placed into her mother's arms upon entering this world as she embarked on the mission she undoubtedly accepted from her Father in Heaven. I am sure MaryBeth and Rick beamed as they beheld their sweet, perfectly healthy, beautiful baby girl.

It is important to recognize the fact that Lily's name was chosen with great care. She was named after Lily Airapetian, a young woman both MaryBeth and Rick met while serving on their missions in Bulgaria, and Katharine Rebecca Dillingham, Lily's auntie whom MaryBeth respects very much and has a very close relationship with. Both are women of great faith, courage and perceverence-- characteristics proven to serve Lily through her life on this earth.

Doctors first became aware of Lily's illness when she was 7 months old. The discoveries made at this routine office visit were only the beginning of what would become a long road of trying events. However, it became very clear that Lily-- this strong-willed spirit, this chosen daughter of God, set out to live her life to the fullest in spite of her ailing body.

She found joy in the simple things in life, which brought joy to those around her:

Lily loved "Blues Clues." As far as I am concerned, the creator of that show has made it into heaven. Lily loved that dog, along with Steve and the rest of the characters. I'm sure the pain she felt most of the time went away as she sang along, played along and talked back to the characters on that show. I don't know that there is a person in this room that couldn't help but smile when watching Lily get excited while watching "Blues Clues" or "Veggie Tales."

Request for Pizza granted - will she eat it?Lily sneaking a bit of her daddy's grilled pinapple before a 'Carolina Barbeque'Lily loved food. Few things were more exciting to Lily than food. When asked what she would have for lunch, she would shout, "Chicken! Pizza! Ice Cream!"-But the thrill was often in the expectation, for when her specific requests were granted, it wasn't unusual for her to turn them down with a simple, "no."

Strawberries were definitely among her favorites. One afternoon while grocery shopping Lily became restless in the front of the cart. To calm her down, a quart of strawberries was placed at her side. Her petite fingers gently reached down to grasp one berry at a time. She would bite only the very tip before placing it back down into the container and finding a new strawberry to savor.

Lily in her Pink Hat, by Elle 
Fagan Artiste Artist Elle Fagan stumbled across Lily's site recently and, in her words, "I was so taken with the photo... that I stopped what I was doing to do the little painting, above, and sent it to her Mother, including permission to use it to help pay the medical bills incurred in Lily's care."

Thank you Elle! You can find her website here.

Lily playing dressup in a big, floppy pink hatLily loved to look cute. She loved to model and wear new clothes. She often tugged and pulled to make sure everything was just in place. She would brush her hands down her shirt as if to remove any crumbs or wrinkles that displeased her. She sat perfectly still in front of the mirror while her mom did her hair and told her she was a pretty girl. Lily was very particular about the shoes she would wear. Many a pair of shoes were returned to the store because they were not to Lily's liking.

Lily loved her cousins. She often greeted them with a "hi!" followed with a gentle hug and kiss. She enjoyed being surrounded by them while playing on the floor side-by-side.

Lily loved the word, "no." Perhaps it was her favorite word. This word came in quite handy as she had a very strong opinion and will. Not long ago while in the hospital a Chaplain came to visit Lily. She was friendly and began asking Lily a series of simple questions. Her reply to each was clear and direct, "No!" The Chaplain, in one last desperate attempt to win Lily's affection asked, "Do you know any words other than 'no'?" Lily's swift reply, "Go away!"

Later, while in the hospital, Lily lay in bed in and out of sleep. MaryBeth remembers Lily opening her eyes and looking around towards the ceiling. After a moment of this, Lily scrunched her face, closed her eyes and turned her head to the side and said, "no!" MaryBeth quickly warned, "Damn it, Lily. You better not be telling the angels no!"

What brought Lily the greatest joy was her family. She cherished her family. She was proud of them and wanted to share them with those around her. She would point to Aren and say, "Look!" The response, "That's your brother, Aren!" And then her emphatic reply, "Yeah!" This game would go on until each member of her family had been recognized. It was said that you knew you were in good with Lily when she introduced her family to you.

Aren holding LilyLily loved her brother Aren, and Aren reciprocated that love. It is a love that is undeniably eternal. On Aren's way out of Lily's hospital room after saying his goodbyes to his beloved sister, he quickly turned back and yelled, "Hey Lil'?"

"What?" she asked.

"Guess how much I love you."

"What?" again she asked.

"I love you to the moon and back!"

Lily was definitely Daddy's little girl. She loved Rick so. If Rick was there, Lily was in his lap, under his arm, or sitting at his side-playing, laughing, cuddling, or just sitting contently.

Lily cuddling with her Daddy at his graduation barbequeRick was Lily's hero. She waited for his arrival home every night from work. As Aren ran out to great his dad, Lily was not far behind, pumping her little arms to aid her feeble legs with every stride, to get to him as fast as she could.

MaryBeth and Lily at Myrtle BeachLily loved her mother. The night Lily left her family-- as she lay in her bed in and out of consciousness, MaryBeth leaned down to tell her she loved her. Lily, no doubt, with all of her strength and certainly through pain whispered, "I love you, too, Mom."

Not quite three years after doctors placed little Lily into her mother's loving arms at birth, they took her worn and tired body from her mother's embrace early in the morning of January 3, 2005. The time had come for Lily to return to her first home.

It is easy to ask why such hardship must be endured-especially for a child so young. In times of such doubt, perhaps it would help to consider this wise council: QUOTE-- "Death is beautiful and simple. To question "why" takes away from the simplicity of it." END QUOTE

Brothers and sisters, I have a testimony of the Plan of Salvation. I know that our perfect, all-knowing Father in Heaven sent His Only Begotten Son, Jesus Christ, to this earth to be a Savior to all mankind. This selfless act is what enabled Lily to be born to this earth, fulfill her mission, and return again to His presence. She now is busy in the work of the Lord as she awaits her family. What a joyous day when they will be reunited for eternity. It is indeed a "beautiful and simple" thing.

I say these things in the name of Jesus Christ. Amen.

Arizona Eulogy

Lily Katherine Harper was born into a family full of love March 19th, 2002.

Lily loved pizza and strawberries. Lily also loved being held and cuddled, especially by her daddy. She loved watching veggie tales; she even woke up at three A.M. to request veggie tales and apple juice -- only to fall asleep moments after her request was met.

Beachy Baby - Lily with her beach hat and glassesLily was all girl. She loved having her fingers and toes painted, and she loved new clothes. Once she got a new coat (black leather with a fur collar and matching hat), she wore it all day to show her Daddy when he came home from work, and then knowing she looked adorable, she wore it around the house until bed-time.

Lily loved spending time with her family and always wanted to be cuddled before she fell asleep. Lights out, fan on, she would point to the bed and her mommy or daddy would hold her until she fell asleep in her big girl bed.

Lily was a strong little girl. She taught all of us so much and we will all miss her. Lily passed away January 3rd, 2005, being loved by her family and loving them right back. She never said goodbye; she only said "I love you."

Medical History

Lily in her blessing dressLily Harper was born on March 19, 2002. Her parents, MaryBeth and Rick, were very happy to have a healthy, beautiful, baby girl (considering the enormous medical problems they were having with her older brother Aren). However, it did not take long for similar health problems to manifest themselves in Lily. When she was diagnosed with a massive ear infection at four months, her parents braced themselves and prayed for strength to raise a second sick child.

When Lily was seven months old, MaryBeth took her to Primary Children's Hospital, in Salt Lake City, Utah. She was scheduled to have her first set of ear tubes put in. Lily's pre-op lab work revealed that her Oxygen level was very low. Her doctor encouraged MaryBeth to admit Lily for a few days to run tests in an attempt to discover why.

Lily giving a little love to her favorite blues clues characterMaryBeth agreed and admitted Lily. Within 48 hours, Lily developed pneumonia and a blood infection called pseudomonas sepsis. Her blood infection became so bad that it began to make its way to the surface of her skin. Eventually, it destroyed all of the tissue in her right ear-canal and most of her right nostril. Her doctors were doubtful that she would survive.

After four blood transfusions and reconstructive surgery on her ear canal, Lily was sent home on various IV antibiotics and scheduled to return every three weeks for Intravenous Immunoglobulin Infusions (IVIG). Lily's doctors told MaryBeth that her daughter would have died if she had not admitted her.

In February of 2003, Marybeth took Lily in for her routine 3-week check up and blood tests. At this time, doctors discovered that she had a drop in her red blood cell count, and diagnosed her with Auto Immune Hemolytic Anemia. Her immune system was destroying more red blood cells than she could produce. Her doctors added oral steroids to her medical regimen.

In April of 2003, Lily contracted chicken pox from her bother (Aren had shingles a month earlier). Her case was so extreme that doctors found pox on her kidneys and liver. She escaped death once again due to the competency of her doctors and her IVIG infusions.

MaryBeth and Lil at Primary Children'sIn April of 2004, Lily became extremely pale and was taken to the emergency room. Doctors found that her red blood cell count was down to 14 (40 is normal). She underwent two blood transfusions and was sent home after a week. One week later she returned to the hospital for bone marrow testing. Within 24 hours of these tests Lily suffered her first stroke and was again hospitalized.

In June of 2004, Rick was offered a job in Arizona. Soon after his family moved to Arizona, Lily was hospitalized again. She was diagnosed with pneumonia and discharged after three days; however, the pneumonia became so severe that she returned to the emergency room two weeks later, with abscesses on her lungs. She was treated and sent home, despite her apparent weakness.

On September 1 of 2004, Lily was admitted to the hospital looking extremely pale. Again, her red blood cell count was down. Doctors gave her multiple blood transfusions to correct the problem. She returned to the hospital again in October for pneumonia, and again spent two days in the emergency room in November. At this time she was diagnosed with Severe Combined Immunodeficiency Syndrome.

Lily loving her mommyLily and MaryBeth flew to Washington, D.C. to meet with immunologists at the National Children's Medical Center, to discuss the possibility of a stem cell transplant. Permission was granted and by mid December, multiple donors had been identified. She was tentatively scheduled for the transplant in January or February of 2005.

On December 1, 2004 Lily was once again hospitalized. This would be her last time. She was diagnosed with multiple strokes and pseudomonas sepsis. Her conditions were treated vigorously. Lily responded well and her doctors hoped to release her in time for Christmas. However, a spinal tap revealed that she had developed bacterial meningitis. Multiple combinations of antibiotics were used to fight it, but the infection could not be stopped. On December 30, 2004 her doctors informed MaryBeth and Rick that there was nothing more that could be done to save Lily's life. Her immune system disorder had finally taken its toll.

The decision was made to stop all medications (except those that would ease her pain). On the morning of January 3, 2005, Lily returned to her Heavenly Father, leaving behind a legacy of love that cannot be matched.