Accessibility for Claire
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My name is Karolee Ondracek, and I am setting up this site on behalf of a very special little girl and her family. My three-year-old niece, Claire, was born with Spina Bifida and Chiari Malformation Type 2. Claire is medically complex, but she is able to be at home with twenty hours per day of home care nursing. Her parents, Chad and Becca, both hold full time jobs even though Claire requires 120+ various therapy/doctor appointments per year. Chad and Becca’s goal has always been to provide a comfortable yet functional home environment for Claire and her older sister, Grace, and their family dog, Morgan.
I would like to share more of Claire’s story so that you can see what a true blessing she is to all of us. Prior to Claire being born, Chad and Becca were aware of her Spina Bifida diagnosis but not the complexities of the defects. As Claire’s parents they embraced parenting her and the unknown challenges they would face. Claire’s first surgery was the closure on her back. She required a tracheostomy because of paralyzed vocal chords and within the first month of life she had four surgeries, which included a gastrostomy tube, a cranial decompression, and a cerebral shunt. After forty-five days in the NICU, Claire was able to come home! She requires twenty hours of home care nursing per day during which the nurse does suctioning of her trach, urinary catheterization, physical therapy, monitoring of Claire’s vitals and her bipap equipment as she sleeps, going to pre-school, maintaining a clean environment, as well as any other needs Claire may have. To date Claire has had ten surgeries including cranial shunt revisions, unthethering of her spinal chord, and cranial decompressions. Claire is a fighter and a super star! Even though she has pain, she insists on “do it myself!” Claire is very happy, resilient, determined, intelligent, and does not realize she has any physical limitations. Chad and Becca foster a positive approach in their home! They say “why not have this happen to us” instead of “why is this happening to us.”
As Claire is growing and thriving, the need for equipment is growing as well. Chad and Becca’s home is a small three bedroom (one bedroom not accessible for Claire), one bathroom home. They purchased it eight years ago with the intention of it being a starter home. With the decline in the housing market, selling their home has not been an option to acquire more space.
Claire’s bedroom is part of the living room. Her assistive devices and therapy equipment, wheelchair, standing board, two therapy benches, kid walk, zip zac, exercise balls, medical supplies, etc, are also in their living room space. Their home is not handicap accessible which is a definite issue as Claire grows. The family lives in Crystal, MN that is close to medical care for Claire, Chad and Becca’s work, and Grace’s school. Chad and Becca have done an outstanding job organizing and keeping a clean environment in their home for Claire, Grace, and themselves. However in order for Claire to have accessibility and for all of them to be able to participate in family life, remodeling a different larger home or building a new home is the goal.
My friend Jodi Ingstad and I, along with other family members, have started organizing a plan to provide handicap accessibility for Claire and room for the family to spend quality time together. This is where we need your help. Our goal is to have all of the costs of any remodel or building a home covered so when completed, Chad and Becca will be able to just enjoy their new home.
Help of any kind is greatly appreciated! Our wish is for Claire to have the best life possible and be able to share in day-to-day life with her family in a home that makes that possible.
Thank you! Thank you! Thank you!
I would like to share more of Claire’s story so that you can see what a true blessing she is to all of us. Prior to Claire being born, Chad and Becca were aware of her Spina Bifida diagnosis but not the complexities of the defects. As Claire’s parents they embraced parenting her and the unknown challenges they would face. Claire’s first surgery was the closure on her back. She required a tracheostomy because of paralyzed vocal chords and within the first month of life she had four surgeries, which included a gastrostomy tube, a cranial decompression, and a cerebral shunt. After forty-five days in the NICU, Claire was able to come home! She requires twenty hours of home care nursing per day during which the nurse does suctioning of her trach, urinary catheterization, physical therapy, monitoring of Claire’s vitals and her bipap equipment as she sleeps, going to pre-school, maintaining a clean environment, as well as any other needs Claire may have. To date Claire has had ten surgeries including cranial shunt revisions, unthethering of her spinal chord, and cranial decompressions. Claire is a fighter and a super star! Even though she has pain, she insists on “do it myself!” Claire is very happy, resilient, determined, intelligent, and does not realize she has any physical limitations. Chad and Becca foster a positive approach in their home! They say “why not have this happen to us” instead of “why is this happening to us.”
As Claire is growing and thriving, the need for equipment is growing as well. Chad and Becca’s home is a small three bedroom (one bedroom not accessible for Claire), one bathroom home. They purchased it eight years ago with the intention of it being a starter home. With the decline in the housing market, selling their home has not been an option to acquire more space.
Claire’s bedroom is part of the living room. Her assistive devices and therapy equipment, wheelchair, standing board, two therapy benches, kid walk, zip zac, exercise balls, medical supplies, etc, are also in their living room space. Their home is not handicap accessible which is a definite issue as Claire grows. The family lives in Crystal, MN that is close to medical care for Claire, Chad and Becca’s work, and Grace’s school. Chad and Becca have done an outstanding job organizing and keeping a clean environment in their home for Claire, Grace, and themselves. However in order for Claire to have accessibility and for all of them to be able to participate in family life, remodeling a different larger home or building a new home is the goal.
My friend Jodi Ingstad and I, along with other family members, have started organizing a plan to provide handicap accessibility for Claire and room for the family to spend quality time together. This is where we need your help. Our goal is to have all of the costs of any remodel or building a home covered so when completed, Chad and Becca will be able to just enjoy their new home.
Help of any kind is greatly appreciated! Our wish is for Claire to have the best life possible and be able to share in day-to-day life with her family in a home that makes that possible.
Thank you! Thank you! Thank you!
Organizer
Becca Wurgler
Organizer
Minneapolis, MN