This week’s spotlight is on Hannah, and her Hope For Hannah movement !
Hello Hannah, so tell us, what section do you live in ? in Farmbrook Levittown PA
Any brothers or sisters you want to mention ( do you get along lol) ? I have 2 older sisters, Faith 13 and Samantha 11., they love me!
Grandma and grandpa’s ? Yes 2 grandmama and 2 grand pops
What’s your favorite toy ? Sally the seahorse !!
Do you have any pets ? Yes, Scrappy a English bull dog.
What are your favorite outfits to wear ? I like anything yellow with my bows.
Tell us a little about your mom and dad ; My mom and dad are the best. They are engaged to be married. My moms name is Vicki Pizzullo and my dad name is Justin Ginion. They don’t get out much because I am sick and most of their time is taking care of me. They will do anything for me;) that makes them happy.
The doctor gave me 1 1/2 to 2 years life expectancy, my mom and dad know it will be longer;) they have a lot of hope. I eat from a feeding tube and I have to be suction often. Since I can’t swallow that good. I am on a lot of medications to help relieve the pain. I have really bad acid reflux. I am getting a surgery in September to help with my throwing up.
Thanks so much Hannah (and mom and dad). We as a community are praying for you everyday! Before we go today, Hannah wanted us to share some info on her condition to spread awareness. She also reminded us to tell everyone to make sure they get their Hope of Hannah / Levittown fundraiser shirt !! ( links posted on Levittown Comforts Facebook page https://www.facebook.com/LevittownComfort )
Globoid Cell Leukodystrophy, more commonly known as Krabbe (crab ā) Disease, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems.
Children who inherit the disorder lack an important enzyme (GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is the protective covering of the nerve cells and acts like insulation surrounding an electric wire.
When the enzyme GALC is deficient, it produces toxic substances in the brain, causing myelin loss, change to brain cells, and neurological damage.
Krabbe Disease has four phenotypes: early infantile, later onset infantile, adolescent, and adult. Progression of the disorder is rapid and death occurs in early childhood in the infantile types.
One in 100,000 live births in the United States are afflicted with Krabbe Disease. Approximately 2 million people (or one out of 125) in the United States are carriers of the genetic deficiency that causes Krabbe Disease. Yet, awareness about this disease is very limited. Until recently the only treatment options were limited to symptom management and palliative care.
Now, a new and revolutionary treatment, Cord Blood Transplant
is saving the lives of many sick, young children and babies. This new method of treatment is bringing new hope to those afflicted with a variety of diseases including Krabbe, other Leukodystrophies and Lysosomal Storage Disorders.
Krabbe Disease is Genetic
Krabbe disease is inherited in an autosomal recessive manner. If both parents carry a disease-causing mutation in the GALC gene there is a 25 percent chance of having a Krabbe affected child with each conception, a 50 percent chance that each offspring will be a carrier and a 25 percent chance of having a child who does not carry a disease causing mutation.
This genetic disease is found in all ethnic groups.
The carrier rate in the general population is estimated to be 1 in 125. Krabbe Disease occurs in about 1 in 100,000 births in the United States.
Diagnosis can easily be made by testing the white cells from a blood sample for GALC activity.