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Amy, Mandy & Susie MillerIt is so hard to believe our three girls are gone. Their suffering is over with and we know they are safe in the arms of Jesus.

We will never forget their sweet smiles, their charming personalities and their cute senses of humor. We feel blessed to have had them for all these years. How we miss them.

- David & Mary Miller 
- Anna & Andy Byler

 

2008 Memorial

Truly the Children of God: A tribute to the Miller girls
- By Dianne Brown

It is with great sadness that I write this memorial to "my three Miller girls." Amy passed away on Jan 22. Her sister Mandy died last year, and Susie passed away in 2002. I was their teacher for most of their school years, and they will forever live in the hearts of all they touched. 

“Prepare to fall in love." That was a comment told to me when Mandy Miller was transferred to my pre-school classroom. Never did I expect the rewards of what was to come. I had before me the most beautiful child. She had a warm and giving smile that captured your heart. No one knew at that time why she was stumbling often and why her two younger sisters were having the same difficulty.

We were triply blessed when Amy and Susie enrolled. But soon after that, they were diagnosed with NBIA, then called Hallervorden-Spatz. Everyone at the special education school was devastated and we held counseling sessions with hospice and trained counselors. We all shed countless tears.

Their condition required unique techniques and goals with constant revisions for their ever-changing positioning and comfort. They lost their mobility, verbal communication and ability to help themselves, but their mental abilities were intact and continued to accelerate.

Adaptive communication methods were employed and the girls never lost their ability to relay their feelings to us. Trachs, G-tubes and implants followed, along with nursing staff. But each day of their lives they seemed to give more to us than we gave to them.

To love and make every day fun and full of sunshine became the motto of my classroom and we all became better people because of these girls. Because of the special needs, the girls stayed in my classroom for most of their educational careers. Yet, they were not secluded. They were extremely social and were known and loved by the whole district. I truly believe that staying in school extended their lives.

Each girl was unique and caring. Mandy, the oldest, endured all kinds of treatment and trial recovery methods. She suffered more than the others and we all cried so many tears for her as she suffered. Amy was the soft, motherly child who loved her baby dolls and was often given babysitting responsibilities for other children in the class. She took the duty seriously. Susie was the feisty one with an extremely strong personality who loved to play jokes. She seemed to fight her illness the hardest, which often caused greater discomfort. But she hated what was happening to her.

All died peacefully. Susie with Amy holding her hand; Mandy, gracefuly and thankful to others. Amy was in a coma for a short time before her death but awoke with a smile on her face to tell us a last goodbye. 

My heartfelt sympathies to Mom and Dad Miller who gave of their lives for so many years to care for the girls. They are such beautiful people who never questioned their purpose. My love to Anna, their younger sister who is expecting her first child in June. She was a major caregiver with always a smile on her face and never a complaint. 

God allowed us to hold and love these girls for a short time but the impact they had on our lives will last forever. They enriched us all.

 

2002 Memorial

Susie Miller, who helped inspire Dr. Susan Hayflick to study NBIA, has died at age 16. Susie was born Oct. 12, 1986, and lived in Clymer, N.Y., with her parents David and Mary Miller, and her sisters Amanda, Amy and Anna. She died Dec. 2 at home.

Susie, Amanda and Amy were diagnosed with NBIA (HSS) in 1989. Anna does not have the disease. The Miller family and the Amish community that has several other affected individuals, was Hayflick’s first experience with this disease and prompted her to focus her research on NBIA.

Susie attended Hewes Educational Center in Ashville, N.Y.

 

Memories of Susie

- By Mary Miller

When I think of Susie, I think of the way she smiled and made her eyes sparkle, and how she occasionally showed her temper when we misunderstood.

It was wonderful when she showed other people how much she understood.

It was sad when we couldn’t get a smile from her because she was so miserable.

She was one of the sweetest people I ever knew.

I remember how much she talked and how fast she walked between ages two to four, as if she knew she didn’t have much time.

What Susie liked best was when her Dad came in to have coffee with her and told her he loved no one else as much as he loved her.

I want to always remember the good times we had with Susie when she was healthy enough to enjoy life.

I’m glad that she didn’t have to suffer any more and that she didn’t have to go to the hospital or make the decision to have another surgery or not.

There is nothing to say. It is harder than I thought it would be.

I hope the people at school know how much Susie loved them and that there was no other place she would rather be.

It meant so much to Susie when people took time to talk to her, hug her, or kiss her on the cheek.

Our family is sad without Susie here with us, but we try to be happy for Susie and we like to think of her as an angel that can fly, run, talk, eat and play with all the other angels that have gone before her.

 

 

 

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