Lend a hand for Barbara Shanley and her family.

Barbara Shanley is an amazing wife, mother, grandmother, sister, aunt, friend, team-mate, colleague; a true inspiration, a person who has had a positive impact on anyone that she has crossed paths with. She is smart, honest, loyal, compassionate, strong, funny, beautiful and any or every positive characteristic in-between. Those who know Barb know exactly the person she is. A true role model; a person to look up to, someone you could talk to in confidence and be heard, not judged. Barb is a blessing, truly, a wonderful, caring, respectful, loving soul.

Sadly, in reading this, you are hearing that Barb has been diagnosed with CJD. Creutzfeldt-Jakob disease (CJD) is an extremely rare, degenerative brain disorder. It affects about one in every million people per year worldwide. People with CJD typically develop symptoms later in life (age 60-65) and may show changes in behavior, memory troubles, lack of coordination and vision problems. As the disease progresses, there may be rapidly progressive deterioration of mental functioning, memory (dementia) and muscle control. CJD is a fatal disease and individuals diagnosed have a life expectancy of less than one year. Individuals may then experience rapidly progressive loss of intellectual abilities, demonstrating impaired memory and judgment and distinct personality changes.

Neuromuscular abnormalities become more apparent at this stage of the disorder and may include muscle weakness and loss of muscle mass (wasting); muscular rigidity; tremors; repeated, involuntary, shock-like muscle spasms (myoclonus) and/or slow, continual, involuntary writhing movements, particularly of the arms and legs (athetosis); increasingly impaired coordination of voluntary movements; and/or difficulty with speech (dysarthria) due to impaired muscular control. Vision may also become increasingly impaired.

This fundraising campaign is extremely hard to post. Unfortunately, the decline of the disease is so rapid that in just 2 months she has gone from fully functioning and normal, to losing her ability to talk and walk unassisted. Barb has and is going to need continuous care and support to ensure that the remainder of her time with us is lived out as enjoyable and dignified as possible. Currently care is through family (Husband: Mike, Daughter: Myra, Son: Nic, and Sisters: Rachel, Teresa, Sylvia, & Bridget). Extended care and support is constant and as a family we have decided it is a necessity. All donations will go directly to the cost of Home-Care Support.

As much as support is needed, at this time we are asking that you do not contact members of the family regarding Barb’s diagnosis. Every day is a new day and there are many challenges to come. Support is more than appreciated and we thank each and every person who donates.

Nothing but Love,

Barb, Mike, Nic, Myra, Sisters, Grandbabies & all.