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Catherine’s Story
By
Connie Smith, Catherine’s Mother
Over a year ago, I made my first phone call to Easter Seals Service Dog
program to inquire about a trained Dog for Catherine.
Catherine is my 13 year old daughter who has a rare skin disorder called
Epidermolysis Bullosa (EB). EB causes Catherine’s skin to be so fragile that
the slightest touch can cause the skin to tear and blister, both inside and
outside of her body. People born with EB lack the anchors that hold the
layers of their skin together. Think about it like the grass on your lawn.
The roots hold the grass to the soil. With EB, the roots are missing.
Catherine’s skin has nothing holding it to her body. As a consequence,
normal wearing of a tee shirt or chewing food or riding in a car produces
painful blisters or sores akin to second-degree burns. EB affects less than
50,000 individuals, mostly kids, in the U.S. There is NO CURE, and there is
NO Treatment, only painful antiseptic baths to stave off infections.
Since Catherine has been unable to attend school regularly, she spends much
of her time learning about and being around animals. She loves television
programs on animals and raising her hamsters, two cats, and two dogs. She
fosters animals and is a junior volunteer member at the Montgomery Humane
Society. Catherine also works with other EB facebook friends to “Find a
Cure” for this devastating disease.
EB causes my Catherine to live with constant pain and itching from open
wounds. Catherine’s typical daily routine consists of a painful antiseptic
bath and a grueling two to five hour bandage change which is extremely
painful. New bandages must be applied to her arms and legs, hands and feet,
and her torso in order to protect her skin and to reduce chances of
infection from her open wounds. She must take many medications and vitamins
to help manage her pain and nutritional deficiencies.
Catherine has balance problems, pain management issues, social
self-consciousness, isolation, and sleeping disorders (which affects our
whole family), but at the same time, she has dreams, she wants to be like
other children, she wants to participate in life. I had been searching for a
way for Catherine to experience something positive in her life.
Catherine has dreamed of having a Service Dog that could go with her
everywhere and help our family to be able to go more places together.
Everything about a Service Dog can help Catherine, from lowering pain levels
to providing social interactions to balancing Catherine when she is weak or
shaky. Plus, a Service Dog will nurture Catherine’s profound connection with
animals.
Easter Seals Therapy DOC began looking for a dog immediately after my call.
They searched all over the country for a dog that could be trained to meet
all of Catherine’s needs. They found her a Poodle, who did not shed. She was
trained specifically for Catherine’s needs. Catherine named her Doodle Bug.
Doodle Bug has been a tremendous asset for Catherine. Catherine is now able
to attend outside events without the constant fear of being stepped on or
bumped, whereas before Catherine would avoid going out- she now wants to go
everywhere. Catherine is able to use Doodle Bug for balance control and is
able to attend school with Doodle Bug’s help. With the presence of Doodle,
Catherine is comforted and now able to sleep well. Doodle’s presence alone
distracts Catherine from the pain from her open wounds. Doodle wakes
Catherine if Catherine starts scratching her sores. Doodle has gone to
Disneyland with Catherine, and even stays in the Hospital with her when she
goes in for her monthly throat treatments. Doodle is the treatment beyond
what doctors can subscribe.
With Doodle’s presence, Catherine has more freedom and independence which
gives our whole family more freedom to do things as a family.
With skin as fragile as a butterfly wing, EB patients are dubbed “Butterfly
Children”. My “Butterfly Child”, Catherine, may now be able to live some of
her dreams with the help of her new constant companion, Doodle Bug. Do you
know what that means to a parent? Do you know what that means to our family?
“Priceless.”
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