ROBBINSVILLE, NJ -- The Breden family - parents Elizabeth and Lief and twin daughters, Kelly and Sabrina -- are asking the community for support, so that Kelly can maintain her independence’s currently challenged by an extremely rare genetic disorder. As a family who would do anything for their loved one, they started a Go Fund Me campaign that they say will go towards finding and training a service dog to help the teen girl with her mobility issues.
After many years of being misdiagnosed, Kelly was diagnosed, as the 14th person across the globe, with PACS 1 -- also known as Schuurs-Hoeijmakers syndrome named after the scientist who discovered the genetic mutation. Kelly also is non-verbal autistic.
Today, there are only 157 individuals who have this extraordinarily rare genetic disorder.
According to the Genetic and Rare Diseases Information Center, PACS 1 is caused by a genetic variant that can cause intellectual disability, developmental delay, low muscle tone, seizures and heart defects among other symptoms.
Now, at age 17, Kelly’s independence is starting to be even more challenging as she’s developed mobility issues. She has fallen a few times making her scared to walk without holding onto someone’s hand, furniture or the wall as she goes from place to place.
Even though she is working with occupational therapists, physical therapists in movement disorders, medication changes, and specialists, her independent movement is waning and a limp has become noticeable. The gait trainer is too big to easily navigate the family home or use for a simple walk outside. She is using her wheelchair more often making her all too sedentary for a young girl with her energetic spirit.
The Bredens have buckled down and searched for ways to help their daughter with a four-legged friend – a service dog – that could help her move around more independently.
After many months researching the benefits of a service animal and applying for acceptance into programs that could help Kelly, the Breden family is now working with an organization that could help find her the right companion.
“We want to give her independence and a better quality of life. I will do anything to help my kid; that’s what I do; that’s what moms do,” said Elizabeth.
It could be up to two years for a service dog to join the Breden home. And the training and fees are costly.
With the support of friends and their community, the Breden family has launched a Go Fund Me page, to help cover the estimated $38,000 cost of providing Kelly some independence through a service dog.
“We are hoping to find a dog that is big enough to meet her hips and give her stability and that’s going to help her move,” said Elizabeth, noting that her daughter is a petite young lady at five-feet tall.
A service dog also would help the entire family as they are always sure to have one person with Kelly for her safety. During the pandemic, the family have all been working and schooling at home like many.
But this isolation has been particularly tough on Kelly who has not spent much time with her classmates at the Mercer County School for Special Services. The family also have been abundantly careful in making sure the virus stays out of their home.
The only thing that the Bredens are hoping to welcome home soon is a new four-legged friend to help Kelly move around safely and happily.
To support the family's effort to give Kelly her independence with a four-legged best friend, donate through Go Fund Me.
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