In utero, we knew that Anastasia limbs were growing extremely small and behind, she had suffered from brain bleeds and fluid on her brain, she had a six polydactyl toe on her left and was having issues swallowing. Due to these serious complications, Anastasia was monitored very closely at Children’s Hospital of Philadelphia where she was delivered May 1, 2018. Anastasia spent 127 days in the NICU where she under went many procedures. In the hospital, she had breathing issues, surgeries for a G – tube for feeding and nutrition purposes, intestinal malrotation and tethered cord spinal cord surgery. Through all of Anastasia’s challenges she always stayed strong and has held such an admirable tolerance for pain.
After discharge, Anastasia spends most of her Monday through Fridays doing therapy. She has been working with OT, PT, Speech, Aquatic therapy, commission of the blind therapy, hearing loss therapies and so on. Anastasia loves therapy and works very hard in all of them.
She also has had surgeries for her eye issues, ear tubes for her conductive hearing loss in her left ear, C1 surgery on her neck, muscle biopsies, multiple MRI & CAT Scans, every possible genetic test which have all come back negative.
As you can imagine, Anastasia has many doctor’s appointments. She sees Genetics, Neurology, Ophthalmology, Orthopedics, Pulmonary, GI, Audiology, ENT, Urology just to name some of her regular specialists she visits.
Anastasia is also part of a program called Project Walk, Anastasia is unable to walk at this point but we continue to work on it! Project Walk is not covered by insurance so we pay out of pocket for this weekly training that she truly loves.
While Anastasia has made big strides, unfortunately her long term prognosis remains unclear.
Anastasia is a happy little girl, who loves to smile and clap her hands. She loves Peppa the Pig, the sunlight on her face, watching birds, and laughing at her big brother Bobby.
The cost of Anastasia’s care can be trying. Even with insurance, we face many out of pocket expenses, on going rehabilitation therapy, medical equipment, and the reality of needing to make home and vehicle modifications in the future.
We are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Anastasia and her family have 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!
