Paul (Pauli) Shanno
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This Site is a place for Memory, Peace, Love, Friends and Family.
Please light a candle to let Paul's famliy know you were here!

This memorial website has been created in the memory of my son, Paul Ryan. He began dancing with ^angels^ on May 14, 2003. He will forever be my ray of sunshine.

On July 26, 1993, Paul was born with a rare disability called: hydranencephaly. He was missing a large portion of his brain and in place of the missing parts of his brain, fluid filled that portion of his head. Right after birth, his apgar scores were normal and no oxygen was needed. He was then taken away for some testing. A CAT scan and MRI confirmed a diagnosis of hydrocephalus complicated by hydranencephaly. I was told to take him home to die, that he would never know his mother, never walk or talk. He would just lay there and breathe until his organs shut down. 

  Well, he took right away to eating from the bottle- he ate like a champ! He amazed the professionals in every way he could but they still pressured me into placing him in a nursing home.They felt that was the "best" place for him. An attending ER doctor had accused me of drug abuse and or alcohol abuse, stating that is why Pauli was born with a disability. Blood tests on both Pauli and I later confirmed what I had told her, there was no such abuse. Hydranencephaly has no known cause, it is not genetic nor has it been proven to be preventable. It is possible that Pauli had a stroke in utero or something stopped blood flow to cause his brain to stop developing.

I toured one local child's nursing home but was dead set against him going anywhere but home with me. He belonged at home with his family no matter how long or short his life was to be. After ten days in the NICU he came home. He progressed as a normal baby for the most part. By time Pauli reached four weeks of age he had become very irritable, stopped eating so well and was not sleeping much unless you held him. There was a large increase in Pauli's head circumference and he had "sun setting" eyes. After consulting with his pediatrician and a neurosurgeon a VP shunt was placed. After the shunting his mood changed, he was a happy baby again. He began sleeping and eating better. By time he was a year old he, was thirty pounds (from 4lbs 14 oz at birth). He was never a big sleeper, he could go for days on only a twenty-minute catnap.

A few weeks after his surgery he began with our local Early Intervention Program and home based therapies. His therapists came to our home to give him physical, occupational, speech therapy and special education. He remained in Home Base Early Intervention until his third birthday, he then began attending a Center Based Preschool. He loved to ride the bus. If you could have seen his face light up as he heard the bus pull up!

At the age of one and a half, Pauli began seeing a neurologist for possible seizures. He also started medication that same year for the seizures. His seizures were "starring" spells. Pauli remained hospital free until the age of two. He was very healthy and happy, except for the occasional cold or ear infection. He came home from his first hospital stay with his first piece of medical equipment, a nebulizer for breathing treatments. Pauli had recurring ear infections over the yrs that lead to tubes being placed in his ears. The tubes were placed to help stop the ear infections, which also lead to respiratory problems. Respiratory problems seem to be the one issue that he struggled the most with throughout his life. Many more pieces of medical equipment made their way in to our home over the yrs!

Paul continued to develop and amaze us all. Because of the severe brain damage (hydranencephaly), he was also diagnosed with cerebral palsy. Pauli was depended on a wheelchair as his main mode of mobility. That didn't stop us from signed him up for a local special needs bowling league and. he also started on a Challenger Little League team that same summer. Both leagues would have “ healthy” kids from the community come and assist the kids who were differently-abled participate. Paul thrived on all the attention he received while being a social butterfly and enjoyed his therapies. So along with the many doctors appointments he had, we tried to do the “normal" things kids his age did.


    Up until the age of four Pauli ate orally, very well. He would eat just about anything especially pudding with whipped cream! Getting fluids in him was always a big issue. He also began being hospitalized more for respiratory issue. By being so sick so often he did not have the energy to eat enough to sustain his weight. Eating became a chore, taking over an hour sometimes to get one meal in him. So after much contemplation, medical advise from his team of doctors and an array of testing, the feeding tube and Nissen Funduplication was placed. He was just shy of  6 when it was finally placed. Pauli no longer struggled to eat, we were able to get a ton of fluids in him, he gained weight, respiratory issues subsided and feeding when he was ill was so much easier on all of us. He no longer had to taste any of his meds. either!!! With the Nissen his refluxing was finally under control and the respiratory issues almost ceased to exist! Though the numerous and frequent pneumonia(s) did do damage Pauli lungs.

     Pauli was also declared legally blind (cortical visual impairments) shortly after birth but wore glasses to help with what vision he had. He loved to watch videos, listen to music or play with his light box. When he became school age he attended a Center for the Disabled, School Age program. There he flourished. He received all his therapies according to his individualized school plan and received the social-interaction he thrived on. The Center had an amazing amount of equipment and services all in one place. Pauli especially liked to play with switches to activate toys or music, participate in cooking group while receiving his OT, receiving hydrotherapy in the heated pool and participate in the Special Olympics they held each yr.

     He had an amazing team of doctors over the years. Each doctor treated Pauli with respect and gave him the best medical care they could. Not only did his doctor “listen to mom” when I came to them for help or advise but they heard what I said.  By keeping the team of doctors, therapists, teachers and having a wonderful circle of friends and family Pauli was able to grow and develop to his fullest potential. He loved life. We were able to have an amazing amount of special equipment in our home to help Pauli physically develop. It also gave us the opportunity to care for him at home rather than rush off the hospital every time he was ill. There was a lot we could do for him at home with the help of equipment and home care nursing. Home care nursing provided me with alternative care-givers (nurses) who I felt comfortable enough with, to leave my child in their care. Home care nursing allow me to work on my college degree by attending night school, work a part time job or just be able to run everyday errands with out having to drag Pauli all over the place. He was able to stay home and stick to a normal routine and it gave mom some “me” time.

      I wanted Pauli to live as normal a life as possible. I realized his health didn't always allow that but we did things when he could. He enjoyed OT group on Saturdays then going swimming in the heated pool, shopping, finger painting while in his stander, trick or treating, holiday parties, being read too. . .   And of course being cuddled or sleepin in with mom on Saturday mornings!

     When Pauli was 5, The Children Wish Foundation, granted him a wish. We were able to take him, on what turned out to be, our only family vacation. Thanks to the generosity of CWF, Pauli enjoyed a full week stay in Disney, a visit to a different park each day and a lot of attention from the Disney Characters! Memories I will never forget. . .  
 (check out photos in album)   

     Pauli was a courageous little boy. In the end pneumonia was what took his life. His little heart could not fight the battle for him, he was too sick this time. He fought many battles throughout his life; surgeries, illnesses, physically limitations. . .it wasn't always easy for him.  He taught me so much. . . how to unconditional love someone, to be a patient person and that just be cause one maybe differently-abled doesn’t mean you can’t live life to the fullest! I am having to learn to live life diffently without him here on earth with me. 
Pauli will always be my ray of sunshine. . . 


by Edna Massimilla

A meeting was held quite far from Earth
"It's time again for another birth,"
said the angels to the Lord above.
"This special child will need much love.

His progress may seem very slow;
Accomplishments he may not show.
And he'll require extra care
from the folks he meets way down there.

He may not run or laugh or play.
His thoughts may seem quite far away.
In many ways he won't adapt
and he'll be known as handicapped.

So let's be careful where he's sent,
we want his life to be content.
Please, Lord, find parents who
will do a special job for you.

They will now realize right away
the leading role they're asked to play.
But with this child sent from above
comes stronger faith and richer love.

And soon they'll know the privilege given
in caring for this gift from Heaven.
Their precious charge, so meek and mild
is Heaven's very special child."


"Twas' the night before Christmas
for bereaved parents"


"Twas' the month before Christmas and I dreaded the days,

That I knew I was facing-the holiday craze.

The stores were all filled with holiday lights,

In hopes of drawing customers by day and by night.

As others were making the holiday plans,

My heart was breaking-I couldn't understand.

I had lost my dear child a few years before,

And I knew what my holidays had in store.

When out of nowhere, there arose such a sound,

I sprang to my feet and was looking around.

Away to the window I flew like a flash,

Tore open the shutters and threw up the sash.

The sight that I saw took my breath away,

And my tears turned to smiles in the light of the day.

When what to my wondering eyes should appear,

But a cluster of butterflies fluttering near.

With beauty and grace they performed a dance,

I knew in a moment, this wasn't by chance.

The hope that they gave me was a sign from above.

That my child was still near me and that I was loved.

The message they brought was my holiday gift.

And I cried when I saw them in spite of myself.

As I knelt closer to get a better view,

One allowed me to pet it-as if it knew-
that I needed the touch of its fragile wing,

To help me get through the holiday scene.

In the days that followed, I carried the thought,

Of the message the butterflies left in my heart-

That no matter what happens or what days lie ahead,

Our children are with us-they're not really dead.

Yes, the message of the butterflies still rings in my ears.
A message of hope-a message so dear.
And I imagined they sang as they flew out of sight.
"To all bereaved parents ~ We love you tonight." 
Author Unknown

Click here to see Paul (Pauli) Shanno's
Family Tree
Tributes and Condolences
What a wonderful boy   / Vitaliy (friend of Dani at GP group )
Dani,I do not know that I knew the 'story' of your son before reading here. What a strong and brave boy he was, and I was very happy to read that he have a happy life and received much attention, specially his vacation to Disney. He was so very lucky...  Continue >>
What Grief is..So You Want to Understand..(Poem)   / Shaye Creamer ^i6 Mack's Mom~ Love You (Heartbroken for you )
What grief is... Frank Connor The more the loss we feel The more grateful we should be For whatever it was we had to lose It means that we had something worth grieving for, The one I'm sorry for are the ones that go through life Not knowing what grie...  Continue >>
PRECIOUS PAULI   / KATHY MATHIS, Mama Of Steven (Grieving Parents )
Certainly Pauli influenced many lives. Now he is perfect in every way, no more sickness. May Pauli, my Steven, and all the other heavenly children rest in peace.
In memory of your son   / Karen LaMountain (None)
I saw your memorial in the Albany Times Union which led me to this webpage. Your love for Paul is something that will never pass away. May God bless you and know he is among the angels and held in the arms of our Lord. Sincerely, Karen
just for you   / Lorraine Mummy To Angel Reece
i think you`re awesome !
My love and thoughts with you always..  / Heather Reilly-Jarvis-Goodal-l (Mom's Friend )    Read >>
happy birthday  / Dan Farnan (friends)    Read >>
Always in Farnan's heart  / Dan Farnan (FRIEND)    Read >>
Thank you...  / Sonia Long     Read >>
In the arms of the angels  / Nancy THomason (gp group )    Read >>
Pauli / Lisa &. Noah (hydran family )    Read >>
Angels watch over you  / Esther Lopez (connected by angel families daughter to Angel Ileana Esthervargas )    Read >>
HAPPY 14th BIRTHDAY BABY!  / Dani Mom To ^Pauli^     Read >>
When God Calls..  / Shaye Creamer ^i^ Mack's Mom~ Love You (Angels in Heaven )    Read >>
Happy Birthday Sweet Pauli,  / Linda Morton (GP Member )    Read >>
More tributes and condolences...
Click here to pay tribute or offer your condolences
His legacy

~Love Eternally~ To my Pauli  

My love for you is without end,
And for eternity I will spend.

Holding you so close to my heart,
Never again for us to part.

Living with your face before my eyes,
My love for you only thrives.

You are where an angel is meant to be,
With Jesus, watching over me.

I miss your love, your touch, your smile,
Our separation is only for awhile.

No pain on earth can ever compare,
With the loss of you and my despair.

I walk around in a purple haze,
Passing the moments that turn into days.

Just remember my angel its true,
I'll never stop loving you.

So, I close with my heart in my hand,
Knowing, my son, you understand.

I ask you only for one request.....
Please grant me some peace...some rest.

Loving you forever is my happiness.

Missing you more than I can say

Unknown Author


Angel Friend's web sites :

Pauli's Obituary 5/16/2003  

Paul R Shanno, age, 9, of E.G. passed away suddenly at Albany Medical Center after a brief illness. Born in Albany, he was a resident of the Capital Region all of his courageous life. He was a student at The Kevin Langan School at The Center for the Disabled. He was the youngest player to join the Challenger Little League for Castleton-East Greenbush and a member of the STRIDE Bowling League of Rensselaer. Paul enjoyed the sounds of children's voices especially those of little girls and loved to swim. He loved to ride the school bus and was a joyful little angel. He loved long walks on warm summer days and enjoyed listening to music with his headphones on. His giggle and smile would brighten up a raining day! He was the beloved son of Danielle Shanno, precious grandson of Rose Shanno, nephew of Patrick Shanno, Pam and Jim Garhartt, Denise Adams, Yvonne Hanley, Darlene and Dominick Peek. He also survived by many cousins, wonderful teachers, and very special friends. Our beloved ray of sunshine will be missed! Relatives and friends are invited to attend his services . . . . .

A Little Information On Hydranencephaly:  

Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. An infant with hydranencephaly may appear normal at birth. The infant's head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem normal. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop. Other symptoms may include visual impairment, lack of growth, deafness, blindness, spastic quadriparesis (paralysis), and intellectual deficits. Hydranencephaly is considered to be an extreme form of porencephaly (a rare disorder characterized by a cyst or cavity in the cerebral hemispheres) and may be caused by vascular infections or traumatic disorders after the 12th week of pregnancy. Diagnosis may be delayed for several months because early behavior appears to be relatively normal.

There is no definitive treatment for hydranencephaly. Treatment is symptomatic and supportive. Hydrocephalus may be treated with a shunt (a surgically implanted tube that diverts fluid from one pathway to another).
The outlook for children with hydranencephaly is poor. Death generally occurs before age 1.
The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports a wide range of studies that explore the complex mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding how this process can go awry and, thus, offers hope for new means to treat and prevent developmental brain disorders, including hydranencephaly.

More of his legacy...
Paul (Pauli)'s Photo Album
Uncle Pat holding Pauli, just a few weeks old
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