Tributes
Sometimes we need a place to express our griefs, our hopes, and our tributes
to those we admire in ways that others can share.
This page of the NNPDF's website is set aside for that purpose.
Gene and Dolores Thompson sent the following poem in remembrance of their daughter Janice.
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God looked around His garden
And He found an empty place,
He then looked down upon this earth,
And saw your tired face.
He put His arms around you
And lifted you to rest.
God's garden must be beautiful.
He always takes the best.
He knew you were in pain.
He knew that you would never
Get well on earth again.
He saw the road was getting rough
And the hills were hard to climb.
So He closed your weary eyelids,
And whispered, "Peace be thine."
It broke our hearts to lose you
But you didn't go alone,
For part of us went with you
The day God called you home.
Author unknown
The following tribute was written by Sean Henthorne and Dona, Kayla and Kyle Guyer.
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"Everythings gonna be okay"
13 May 1999
Hurry back from the land of feeling sorry,
Things have changed since you've been gone.
Hurry back to the land of the living...
Move on, ,pick yourself up and dust your boots off and grab your dream,
It's still there waiting for you to open your eyes,
Everythings going to be okay.
Thank the Lord for each day you wake up to.
Without Him you will never make it through.
by Sean Henthorne
On March 7, 1987 Drew Guyer born Kevin Andrew Henthorne Guyer came into this world in a hurry. While his father, David Guyer,stopped at a phone in the
emergency room to call a grandmother; mom, Dona Henthorne and her dad "POP" rode the elevator to the labor and delivery room. Drew tried arriving in the
elevator. Drews first opinions were expressed about life with his middle finger being aptly displayed to his Grandpa Pop who at that moment became
inseparable from him. His first two weeks were touch and go. All his aunts and uncles and grandparents were by his side until he came home. His only
uncle, Sean A. Henthorne I, was only 16 and took him everywhere.
Drew became sick around age 3-4 and succumbed to his passing time on February 5, 1998
with his whole family around and many other friends. Drews mom went into a deep depression as did many of the rest of the family members. Uncle Sean in
particular had a hard time and wrote the above passage to help the family get moving.
Grandpa Pop passed from a car accident on Sept 3, 2001. Once again, the family was sent into a deep depression and Uncle Sean sent out this message.
But tragically, on February 6, 2003, Uncle Sean joined his nephew Drew and his dad "POP" leaving behind many family members to ask why. The day of the
funeral while going through things to show and read to the rest of the family tucked away in a suitcase of important papers in his room, a letter
and this poem were found next to the pictures of all the family members he loved including a 5x7 of his nephew Drew and himself at age 18. We will miss
all three of them but now we know that Drew isn't alone at all now and that they are up there watching us and guiding us until we can meet again.
Sometimes its hard to keep going when we are asked how many kids do we have or what are our plans for the future as so many of us have lived life day to
day and haven't made time to make those plans for our future. We wanted to share Sean's Poem with everyone as a sort of tribute to those left behind.
We have to keep going and everything really is going to be okay.
Dona, Kayla and Kyle Guyer
The following tributes were written by Susan Bethune for her daughter, Lesley, who passed away from Niemann-Pick Type C/D at age 18.
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My dearest Miss Lesley;
It seems like a long time ago when we got the diagnosis. Yet, it went past all to quickly. It is still amazing to me, how you took everything in stride.
You have been in, and continue to burn in the hearts of so many. Yet for me, your mom, I find life so lonely without you here to smile at, to hug,
to kiss, to care for, to take places. The sweet pats you would give on our backs when you would give hugs, the softest kisses you'd leave on our brows,cheeks
or dad's bald head! No one can replace you.
When you asked me, 6 years ago, if you were going to die, do you remember- I told you we all were. We just never knew when. And you were only here on loan from Jesus. He would send for you when your mansion was ready. That gave you such peace. Then your home was ready, time to live as you are, an angel.
I need to find that peace now, except I seem to be unable to summon the power, and the strength that was you. You gave me that power- that peace. Alone, without you, I must work so hard at it.
Everyone says I must keep busy. But the hours that were so filled with you, are just empty, and lonely now. I know that with God, ALL things ARE possible, and I know in time, He will make everything clear. I know it is alright to miss you, I just need to learn how to miss you. I guess in time that will come too.
Enjoy Heaven, you deserve it, you worked hard here on this earth, and until we are with you once more, forever- always, always, and always, we will take you with us.
Love, and kisses,
mom and dad
June 23,2003
In Honor of Miss. Lesley-Anne Doucet
March 10, 1984 - January 15, 2003
Lesley-Anne passed away at home -10 past 12 a.m., in her mom's arms, with her dad beside them both. Private nurse, Mary Chandler was also present
for support and comfort.
Lesley won the fight with Niemann-Pick C/D, and was taken Home to forever reign with Jesus her Lord and Saviour. Lesley was an inspiration to all who knew her, and knew her well. She had a wonderful sense of humor, a smile that was infectious, a radiant beauty, and a pure soul.
She loved her family, her golden retreiver, her cats,
and her dearest friends, especially Wayne Cosman.
Her illness was not diagnosed until she was about
12 years old, as she was really very 'normal' until then.
She never used a wheel chair only at school the last
couple years, or shopping trips of great length.
There was a g-tube placed for feeding about a year
or so before her passing. Until then she ate quite
well.
Lesley was active, and healthy, right up to the end. However, she was getting tired, very tired. And in that Heavenly way God has, the more weary
she became, here on earth, the closer to God she became, and the more her LIGHT shown, as the angels visited her many-many times.They sang to her,
they held her, and comforted her. She was TRULY one of HIS own.
Being a mother, caregiver, friend, and companion to this ray of Heavenly light, has been my purpose, and joy for nearly 19 years. Lesley was, and is, and always will be special, and an earth-angel. I am so honored dear Lord, to have been given this precious doll to care for. Please Father, forgive the times I was crankey, or
said 'no' to her, I was just trying to do what was right. Please forgive me for spanking her when she was out of line, however, as you know, she never really did anything naughty.
Fogive me most for getting tired, and finding some days hard to get through. I would do it all again if you again asked me to care for her. Thank-you most Lord for the wonderful memories we have with her, and until we are together again, take care of her- as I know you will. She is a treasure, and nothing here will ever be the same because of the footprints left on our hearts, left by one of your own,our Miss. Lesley.
The following poem was written by Serina Wisnewski for her son, Cole.
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Fly Away Angel
Fly Away Home
Sent from Heaven on the wings of a dove
Was a tiny angel - an angel of love
The future was planned, his path laid out
By a loving God in Heaven - there is no doubt
The angel was sent with a job in line
To befriend a small boy - and stay a long time
The angel and the boy laughed the day through
playing and singing - such a hard job to do
The angel's eyes were big and brown
So was his hair - with curls abound
The angel and the boy loved to play
But when the angel fell ill the boy would say
"I'm just not sure he feels good today"
He did not have a common cold
But a rare disease the boy was told
A disease that reaches a chosen few
making boo-boo's in tummmies - but I can not do
Said the doctor - not one thing for you
The disease is called Nieman Pick
Just take him home - 'cause he'll get more sick
Love, Love, LOVE him before he's gone
He'll be much happier if he's at home
As time trudged on and the illness got worse
The poor tiny angel began to thirst
But not for liquids or things of this earth
The angel asked God if he could come home
God answered saying, "You've been gone too long"
The Angel of death came in the debt of night
To help the tiny angel begin his flight
When I held the tiny angel close in my arms
I knew it wouldn't - it wouldn't be long
So I whispered to him - fly away angel - fly away home
and in that instant he was gone
An ascent into heaven so peaceful and calm
He flew away in the pale light of dawn
As the angel reached Heaven's gate - he turned around
To say to the small boy - still on the ground
It won't be long and you can come too - for this is home
for me and for you
God prepared this place for angels like us
and when you come it won't be by bus
But by the love of a Father who's faithful and true
Who forgives your sins - if you ask him to
I'll be watching and looking out for you
I'm now your guardian angel - and I love you to
You are my brother and my friend
Be patient - don't worry. You'll see me again
The boy smiled up at the angel in the sky
Being the big brother he tried so hard not to cry
He said "I know I'll see you again"
But I'll miss you so much Bunny Boo - 'till then
This is just a story some might say
Just a story of a tiny angel who flew away
But this is the life we live today
Remembering Cole Bunny Allen
Our angel who flew away
By: Serina P. Wisnewski
In love and honor of Cole "Bunny" Allen and Lane Mitchell Wisnewski (Laney Bird)
The following memorial message was written by the Rustagi family..
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Our son, Brian Rustagi, died Friday, July 12, 2002, at the age of 17, in his sleep with his family at his hospital bedside. Brian suffered from Niemann Pick Type B. Research for an effective treatment is nearing completion and will enter clinical trials soon. Tissue from Brian's body is being donated in an effort to further the research into this disease.
In lieu of flowers, we request that donations be made to the Children's Association for Maximum Potential (C.A.M.P.) in Brian's name. This camp, which Brian attended and enjoyed over the past few years, is a camp for children with any severity of medical needs. It is staffed by doctors and nurses who volunteer their time to help these fragile campers enjoy normal summer camp activities. Each camper is also accompanied throughout the week by a volunteer student buddy. You can find out more about the camp at http://www.serve.com/campcamp/
During Brian's short lifetime, he touched many lives. Ajay and I want to thank you for your prayers and support over the span of Brian's lifetime, and continue to ask you for your prayers as our family adjusts to this loss.
Ajay and Merilee Rustagi
Tim and Julie Kerstiens have written a tribute to their son, Lee Chandler Kerstiens, who died of NPC in November 2002. Lee was 7 years old.
You can read their message here.
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| The following tribute was sent by "Gramma Inny" about her granddaughter, Nicole Dawn Geyer. The tribute was written by a friend of the family. Nicole died of NPC in May 2001 at age 12.
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Sweet Angel
You are the sweetest angel,
that we have ever known,
But the time has come,
And God has called you home.
He let you touch our lives,
Like no one has before,
And in lessons of the spirit,
No one could teach us more.
We'll always see your smile,
Hear your laughter on the wind,
We'll feel you watching over us,
And all the love you send.
Forever in our hearts and souls,
We'll miss you everyday,
For you truely are an angel now,
And Heaven is where you play.
by L. L. Abell
| The following memorial was sent by Mr. and Mrs. Long for their son's 17th birthday.
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James Long
July 6, 1984 - February 17, 2001
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Seventeen you would have been today
We were there for your first breath
We were there for your last
We shared the adventure that was your life
And the profoundness of your death
Letting you go was the hardest thing we will ever do
Your love gave us strength we never knew we had
You were so courageous, even in your exquisite frailty
We drew our strength from your courage
We look the same on the outside
But inside we are not the same people
We are weak, filled with sadness
Everything is different now
We miss looking at your beautiful face, stroking your hair,
Helping you stand, holding your hand
Kissing you goodnight
We settle for the touch of your things
Looking into your eyes through the glass
On the many pictures of you that grace our home
Must we feel this pain to heal our hearts?
Together we go on searching for meaning and purpose
Today we thank you for teaching us patience, acceptance
We have learned from you what is truly important in life
We celebrate your life, reliving precious memories of you,
Our wonderful son
Love, Mom and Dad
| The following tribute was sent by Juan Sanchez, father of Juan Antonio, who died of NPC in 2001.
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Juan Antonio left us on 17 February. It was a beautiful, sunny morning, the sun shining brightly. The brightness of the sun enveloped everything in that hospital bedroom, decorated for a child whose look always gifted us with such tenderness. On that bright, shiny morning, and at the age of just 4½, he said goodbye to us. But now he is with us, but completely free.
That morning we knew he was very ill, but he didn’t cease to show us how to confront such a terrible illness with suchdignity. He kept his innocent look of tenderness and peace. We kissed him and whispered a story to him. The story spoke of a dream world, of a “never-never land”. At times he formed part of these adventures. Never during his life, in spite of his paralysis, did he lack energy. Up until the last moment he was part of those enchanting stories that his mother so lovingly described to him. He said goodbye to us on that bright, shiny morning. But now he is with us, completely free.
That bright, shiny morning, from your bed you could see the corridor of the hospital ward. We turned you round to face the other way where you could have a beautiful view through a large window. I said to you “Look, son, What a beautiful morning, What a beautiful blue sky, the big tree is especially green today. Feel the light that the sun bestows upon us”. Then it seemed as though he was waiting for the arrival of that person who, on so many occasions had accompanied him, in his strolls, had been such warm company, the person who had loved and cared for him so much, his grandmother María. He was waiting for her kiss. Peacefully, he said goodbye, he slipped away from that body that had been trapped by such a rare and terrible disease. I kissed his soft forehead and quietly whispered to him, “Fly high my son, fly and feel free. He said goodbye to us on that bright, shiny morning. Burt now he is with us, completely free.
My son, once again you have taught me another lesson in life. I shall proudly tell anyone who wishes to hear a true story of the suffering that life can cause us; feelings and sentiments that without you, my son, I would never have had the privilege to experience. You have been, despite being just a small child, the best teacher I have, and will ever have, in this life. Thank you for giving us so much my son. I even thank you for the tears that at this moment roll slowly down my face. I can feel you here deep down in my heart, I can feel your PEACE. All I ask is that what you have taught us will last forever, and I pray to God that he will hold you high up in the Heavens. He said goodbye to us on that bright, shiny morning. But now he is with us, completely free.
| The following tributes and messages were written on August 3, 1999, to Joshua Carl Comber of Christchurch, New Zealand on the one-year anniversary of his death from NPC. His parents, Carl and Paula Comber, and his brother and sister, Benjamin and Jessica, wanted to share them with the NNPDF family.
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One year ago today you left me
I'll always remember your laughter when the camera was clicked
At night when I go to bed and the clouds pass, the wind whispers
Your name, "Joshua".
P.S.
I miss you very, very much, you are my special brother,
Always in my memories and my heart.
Love you always
Your big brother Benjamin
Joshua I miss you and you are in my heart.
The little horseman loved to ride with a big smile and sparkling eyes.
I miss , miss , miss you very very much and I want you here
So I can play with you.
I will always love you Joshy-mo
Love your sister
Jessica
Comber Joshua Carl: 22 May 1992 - 3 August 1998
Today marks one year since we held you last
We think and talk about you at every chance
We miss your gentle way, your cuddles and your touch and stroking
your lovely hair
We miss your sense of humor, big smiles, the way your eyes lite up
and your unbelievable strength
We cherish the lessons you left us with, the memories, but long to
touch you just one more time
If only we could remember what that felt like?
You taught us to live one day at a time - you gave us the strength
and courage to carry on.
There are still tears in our eyes, which we wipe away, and love in
our hearts that will always stay
But we know you are free and your spirit will live on forever
That short time was so special and dear, but it was not nearly long
enough, and it isn't fear
Your room is still there with all of your toys - there's a place in
our hearts that can only be yours
Joshy mo, you changed our lives for ever - you will be cherished
forever with memories that last
Son you were such a unique special boy, we are honored and proud to
have loved you and cared for you
Until we meet again our precious one, we will always love and miss
you and will never forget you
Words cannot express our love for you son
Mum and Dad
Joshua's Gift to US
Life is precious - make every moment count
Don't take anything for granted,
don't get too comfortable or arrogant
( life can change in an instant )
When life gets tough - think of the strength and courage of Joshua
to help you through
Know your own inner strength - you'll be surprised, you can adapt to anything
Don't stress about the wee things - think of the big picture
Deal with problems by breaking them down to smaller bits - don't look too far ahead
Live in the present - don't worry about,
tomorrow or yesterday
Balance in life is very important,
Know when to slow life down and when to speed it upDon't pre judge people - get to know them and their circumstances
Unless people have experienced something don't expect them to
understand
Don't let life rule you - make time for the really important things
(family and relationships)
Share and discuss with the ones you love - communicate
Include your Children in all life's challenges - they will probably
cope better than you
A Parents role is not to be judgemental or cause worry but to be
strong, supportive, honest and nuturing.
Life's adversity and challenges equals Personal Growth and Spiritual Development.
Carl and Paula Comber
| Hilda Robins, mother of Stuart Michael Robins (NPC) wrote the following to us: "I would like to, one day, write Stuarts story, he was a very likeable young man, great sense of humour, never once complained about his lot in life. Terry [Stuart's father] & I get through by trying to show as much courage as he did." Stuart passed away on August 3, 1998 at the age of 29. The following tribute to Stuart Michael Robins was written by his mother, on the day after Stuart was diagnosed with Niemann-Pick C.
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My memories are full of love for
a little boy so sweet,
I close my eyes & I can see every
day of his young life,
Everyone has one very special
person, among all the other
people they love,
He is mine & I am his,
I watched him grow, he made me
laugh, he made me cry,
Now a cruel twist of fate will
take him from me, why ?
We were very lucky to have had 11 years with Stu after I wrote those words & we did our utmost to make him laugh every day. We miss him so much.
Hilda & Terry Robins, Nov 14, 1999
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| "Jolynne's Song" was written by Beth Neely on July 1st,1999, the night her friend, Jolynne Burns, passed away after a long struggle with NPC. Jolynne was 33 years old, the wife of Craig Burns and mother of a 5 year old daughter, Kayleigh.
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"Jolynne's Song"
Times were good; life was fun.
I played with friends after school in the sun.
My heart beat strong as I ran carefree.
Everything was grand; God was good to me.
My parents taught me the love of Christ;
I could accept His gift of sacrifice.
My heart beat strong as I prayed on my knee.
Everything was grand; God now lived in me.
When I met Craig I knew he would be
My husband for eternity.
My heart beat strong as I said, "I do".
Everything was grand; but God's work was not yet through.
The sweetest joy in all the earth
Was the day that I gave birth.
My heart beat strong as I held Kayleigh.
Everything was grand; God gave us a baby.
My skies of blue turned slowly gray.
A shadow loomed and came to stay.
My heart beat strong for just awhile.
Everything changed; except my smile.
The sky is blue; the meadow green.
The sun is the brightest that I've ever seen.
My heart beats strong as I run carefree.
Everything is grand; God is good to me.
Lord, your child has one request.
Please bless my family and the rest.
They need You so; please ease their pain
Until we're together once again.
The following poem was written in honor of Trey Ganyard by his sister, Jen.
Trey was 25 years old and had NPC. He passed away on November 22, 2000, after battling pneumonia.
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If You Knew Him for a Minute . . .
By Jennifer Mango
If you knew him for a minute, your mind would start to wonder
What happened to this precious spirit, so young and so tender?
If you knew him for an hour, your spirit would be soothed
To see a mother and her son, together, make the best of every move.
If you knew him for a day, your eyes would be amazed
At the strength, the courage, the fight to go on - which had to be daily made.
If you knew him for a week, your heart was truly touched
By God's grace and mercy spared you and your children that you love so very much.
If you knew him for a month, your walk would become stronger
Knowing if Trey could do it, you, too, could be strong longer.
If you knew him for a year, your spirit would be in prayer
For God's greater purpose and plan for this great Warrior!
If you knew him longer, you would be forever changed
Standing in awe of a young man, whose wisdom graced his face.
If you knew him for a lifetime, within your heart you would know
Here on earth you had the privilege of knowing a godly hero!
In loving memory of my greatest fan and my hero, my sweet Trey!
Missy Ward read this Tribute to Amanda at her daughter's funeral in December 2004.
Amanda died at age 10 from respiratory complications of Niemann-Pick Type C and cystic fibrosis.
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