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Dominic’s story
Dominic was born in February 2004 with Canavan’s Disease.
Dominic’s condition gradually short-circuits the connections in his brain,
causing him to have seizures, difficulty swallowing and breathing, and
occasionally to need oxygen. Dominic lives on a Maine island with his two
brothers and loving parents. The Jason Program team, that visits Dominic
about every other month, provides medical and social guidance to his
caregivers and emotional and practical support to his family. The Jason
Program has also provided the family with a laptop with high speed internet
so they can web-call the office in Portland to speak to the clinical team
24/7 without having to leave their island home. Dominic’s mom Stephanie
states, “Seeing my son’s disease progress is like watching him suffer with
my hands tied behind my back. The Jason Program became our hands, they
helped us do the unimaginable.”
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Hope never leaves: find it,
live it, embrace it.
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Hope never leaves: find it,
live it, embrace it.
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Molly’s story
Molly was born in March 22 2005 with multiple congenital abnormalities
affecting her heart, sight and hearing. Molly’s parent’s Terri and Bill
heard the devastating news when Molly was born that her life expectancy was
short. The Jason Program is honored to have been part of her care-team
through her short life, sadly she passed away in early June that year.
Currently we are offering bereavement support to Molly’s sister and parents
as they move through their process of grief. Molly's parents Bill and Terri
state: “The support we received from The Jason Program
allowed us to focus all of our attention on Molly-assuring that her brief
life was as comfortable and filled with as much love as possible.” Molly
will
forever live in our hearts here at The Jason Program.
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Michaela’s story
Michaela was born in July 1993 with Mitochondrial Disease.
Mitochondrial disease affects how your body makes energy, and can eventually
weaken all your organ systems. Michaela, despite all the problems her
disease caused her, lived every minute of her life with joy, surrounded by
the love of her brother and sister, parents, family and friends. As her
muscles weakened, her systems failed, causing discomfort. The Jason Program
worked with Michaela's family and primary care physician to best eliminate
her pain and provide her comfort and love throughout her last days on earth.
Michaela died peacefully at home in November of 2003. We will always
remember her.
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Hope never leaves: find it, live it, embrace it.
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Hope never leaves: find it, live it, embrace it.
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Corey’s story
Corey was born on December 22, 1988 with Duchenne Muscular
Dystrophy. This disease is a genetic disorder characterized by
progressive muscle wasting, particularly those in the arms, legs and
abdomen. Corey became a patient of The Jason Program at 17 years old, barely
weighing 75 pounds. When Corey entered the program, our
clinical team concentrated on managing his pain and helping him regain his
inner strength. Currently Corey is eating on his own, and maintaining a
healthy weight. The Jason Program continues to support his many medical
needs and encourages him to reach his personal goals. (Like attending
business school then running a business called World Class Gaming.) Corey’s
mom Kiki has shared her thoughts about The Jason Program; “Many doors have
been open through the JP that has improved Corey’s quality of life. Even
though Corey may be diagnosed with a terminal illness, his quality of life
is so important, and the JP has been and will continue to be a vital part of
the quality. The staff genuinely care about the well being of their clients
and their families. Thank you so much! We love you all!!!” |
| Riley's story
Riley, affectionately called Ri, was born on August 6, 2002. By the age of
three, Riley's left arm suddenly wasn't working. After a visit to their
local pediatrician, then to a specialist in Boston, a rare disorder was
diagnosed; Partial Proteus Syndrome and/or CLOVE Syndrome. Simply stated,
this means that Riley's body develops non-malignant tumors. Ri's tumors have
been in, and around, her spinal cord, causing left side weakness, vascular
and lymphatic malformations, and much pain and discomfort. This has meant
numerous surgeries and medical treatments as these tumors have developed.
With only 30 cases of this syndrome known, Ri's mom Kristen began searching
the Internet for support. Upon her searches she found The Jason Program
website and shortly thereafter Ri became a JP patient.
Currently our clinical staff is seeing Ri on a weekly basis, providing pain
management strategies, gentle acupuncture, and play therapy. Although Ri
continues to face some serious medical challenges, her brave heart, positive
attitude and strong resilience always shine through. Ri's mom Kristen
states; Riley inspires us on a daily basis, with her courage and joy for
life. She reminds us to slow down and enjoy each other to the fullest and to
appreciate her favorite activities like swinging, playing in the mud and
chasing butterflies. The JP is like a 2nd home to us. In the midst of
multiple weekly therapies, specialist and hospital visits, the staff at JP
help us pull all the pieces together, to create and maintain Team Riley. The
JP has been priceless to Riley and our entire family, and we are so very
grateful for their support."
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Hope never leaves: find it, live it, embrace it.
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