Addy – Jacobsen Syndrome

My granddaughter Addy has Jacobsen Syndrome, a rare genetic chromosomal disorder. Without getting too clinical, chromosome 11q has a deletion, resulting in severe developmental, physical and mental  delays.  Tomorrow Addy turns 3 years old, she is a miracle, and I have no idea what life would be like without her in our family.

Through the whole pregnancy my daughter was telling the doctors something was wrong, she had morning sickness the entire 9 months.  At the final doctor’s appointment an ultrasound was done to look at the baby’s heart, the ultrasound results showed normal.  The cesarean was scheduled, and when Addy was born she was full term and only 4 pounds 11 ounces, struggling to breath.


After Addy had spent 2 days in the nursery on oxygen with no diagnosis,  my daughter demanded the hospital transfer her baby to a hospital with a specialized NICU.  Within 1 hour upon arrival at the specialized hospital,  it was determined Addy needed to be transferred to U of M for open heart surgery or,  she was not going to survive. Additionally, the new hospital thought Addy may have a chromosome disorder.

In one moment everything in our family changed.  We packed our bags and headed down to U of M hospital, slept in couches and chairs,  Addy underwent open heart surgery at 4 pounds 11 ounces.  She was in the NICU for 6 weeks.  On Christmas eve of 2014 they lost Addy 2 times, she coded, and she survived.  My daughter asked them to not resuscitate, please let her baby go, she has suffered enough.  We all prayed that night, separately, later we all talked and found out we prayed the same prayer. “God, please God take me, she is so little, please take me and not her…”.

Addy pulled through that night, on Christmas morning her vital signs improved. Within weeks Addy was being moved to step down units within the hospital.


It was in the step down unit where the genetics doctors approached my daughter with the results of the chromosome testing.  Jacobsen Syndrome.  They told us do not google it!  Right!  The first thing we do is google it, find out her life expectancy may be 2 years old,  her platelets being low is caused by her disorder,  she could potentially bleed out anytime she gets a small cut.   Then we kept wondering about her eyes, why she could not focus, she is blind. Those who do survive the heart defects and bleeding are severely autistic and could struggle to ever walk or talk.

Tomorrow Addy turns 3 years old!  She will be starting school in January at a specialized facility.  Our lives are so full because of this little girl, she has the BIGGEST heart!  And even though we know God hasn’t promised us a lifetime with Addy,  we know today is promised.


7 thoughts on “Addy – Jacobsen Syndrome

Add yours

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Blog at

Up ↑

Nervous breakdown

A series of unfortunate events…

PTSD Beautiful Trauma

An expulsive cataclysm of the soul

Julie M Palmer

Part blog, part lifestyle site, all relatable.

The Road Less Traumatized

Healing from trauma, one day at a time

Wonder Woman on Wheels

Hopelessly Inappropriate

Naomi Thomas


Adorable Spite #NotMyPresident #NotMyGods #ImpeachGodTrumpPenceBarrPompeo

Sgt USAF DAV who Said... NO!!! They took it for a yes... Christians taking away women's rights... Dictatorship over Democracy... The Witch Hunt, Silencing Atheist..... Twitter censorship @adorablespite

The Distressed Blue Line

Hope and inspiration for First Responders and Military dealing with addictions

Susan Sleggs

Flash Fiction and personal thoughts

reviving emily

taking back my life

Ask The Council

What will you ask Spirit?

My blended lifestyle

God, family, and love=the perfect blend!


The Backstories Of Celebrity News Past and Present Because Sugar Never Expires

Her Patchwork Heart


Life In Detox

Recovery Blogger. Sober AF. Photographer. Storyteller. Writer.

A Creative PTSD Gal

A place where I can be creative and understand me.

Mistakes & Adventures

What I've always wanted

Mental Health @ Home

Building mental wellness on a foundation of strength


Survive Narcissistic Abuse, fight Chronic Illness, and begin to Heal.

800 Recovery Hub Blog

Written by people in recovery for people in recovery

My the Moment

Owning my life with mental illness

Destination Humanity

Chasing big dreams one photo at a time

This Beautiful Life

Find yourself, and be just that

. . .

love each other like you are the lyric and they are the music


Musings of a feminist groupie navigating Chicago's rock scene

Reclaiming Strength;

Mental health warrior;


From the healthcare experts at Crozer-Keystone Health System

Bentham Open

Opening Access to Science

Gone Crazy, Back Soon

Organization of the chaos in my head

Psych Circus

Enjoy, Learn, and Erase Stigma!

Health as a Human Right

Discussing a Broad Range of Health Topics


Changing Perspectives on Mental Health

Imperfectly Perfect

Unconditional Love

An anonymous escape from life

They may see, they might know, but they'll never understand


Speaking Out on the Unspeakable

The Things That Have Brought Me Here

happiness, depression, and a thing or two in-between


A blog to inspire

Gasoline Gypsy

the biker librarian

Jake Steinbrecher's Clonidine Overdose, and Wrongful Death.

Clonidine Overdose, Good Day Pharmacy, Vicki Einhellig, Poudre Valley Hospital, Children's Hospital Colorado, Amy Clevenger, Courtney Lawson, Nicole Peterson

Fragments of my Psyche

pain, hope, love, lust, anxious rambling and all the things in between, eventually becoming my art

%d bloggers like this: