Anna-Stella was diagnosed in utero with a rare genetic syndrome known as Costello Syndrome. Costello Syndrome, characterized by delayed development and intellectual disability affects many different parts of the body. Anna-Stella has a number of these diagnosis. She has a variety of heart abnormalities including tachycardia and hypertrophic cardiomyopathy. She suffers from chiari malformation, scoliosis, endocrine challenges, gastro intestinal issues, as well as cortical visual impairment, oral aversions/oral motor difficulties and orthopedic diagnosis. Unfortunately, in addition to Costello Syndrome, Anna-Stella was born at 28 weeks. As a result of Anna-Stella’s premature birth she suffered a severe brain bleed which resulted in her later diagnosis of spastic quadriplegia cerebral palsy.
Anna-Stella is tracheotomy tube and abdominal feeding tube dependent. Anna-Stella requires equipment for mobility and for positioning and cannot walk, talk, or sit unassisted. She needs cardiac monitoring as well as pulmonary/respiratory monitoring, along with neurological monitoring. Born 3 lbs. 8 oz. Anna-Stella remained in the NICU for approximately 8 months and was then discharged with in home nursing care. At 9 months of age Anna-Stella was completely dependent on ventilator support, cardiac monitoring, tracheotomy care and monitoring, eternal feeding, monitoring of skin breakdown, pulse oximeter monitoring, apnea monitoring, blood pressure monitoring, monitoring of food intake, and blood sugar monitoring. A number of medications are given to Anna-Stella daily, to help treat some of these conditions.
Despite the array of challenges she faces, the progress Anna-Stella has made over the years has been extraordinary. Anna-Stella has successfully grown to 42lbs and has been completely weaned off of her ventilator. She is a loving, thriving, 11-year-old with an amazing smile and contagious laugh. As Anna-Stella grows and matures, the primary areas of physical focus are her reduction in contractors and mobility orthopedically. Anna-Stella works very hard on her therapies. She is strong willed and determined. The main areas of developmental focus are communication and social interaction. The physical and developmental efforts correlate with great complexity. Anna-Stella relies heavily on her body to communicate. Keeping fit and mobile allows Anna-Stella to connect with her peers, family, and care givers by communicating. Anna-Stella uses modified signs and a communication device. She is non-verbal, with a lot to say.
Anna-Stella is very involved. She enjoys a number of extra-curricular activities. She participates in Scouting, modified dance, 4-H, buddy basketball and buddy baseball. She enjoys the variety and the opportunities to socialize with her peers. She adores her dogs, her family, and all her caregivers. She has a desire to belong and do what the other children are doing. Even if it means doing it differently. As she grows, finding equipment and ways to include her in activities become increasingly more difficult. When small, moving her, carrying her, lifting her to “do what the other kids do” was possible. As she ages, as do we. Our aging bodies coupled with her growth prevents the modified play she has been experiencing. As her parents and caregivers, it pains us to meet barriers to these activities. We want for her the best quality of life. We want to provide for her every tool or opportunity. We want to help her be the happiest and best version of her she can be.
Sincerely,
Jessica & Kevin Roberts
Loving parents and passionate advocates of Anna-Stella Charlotte Roberts
Family and friends of Anna Stella Roberts are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Anna Stella has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
