Hello! I want to introduce to you our daughter Olivia, “Livi”. She is a happy and loving 4-year-old who is the youngest of 3 girls. She has a rare genetic disorder called Phelan Mc-Dermid Syndrome (PMS) which is an autism-like syndrome that comes with many challenges. Our Livi has been through a lot in her short life but she rises again and again and keeps meeting life’s difficulties with a big smile and a tremendous heart. In many ways, Livi is our hero with her gift and determination to keep on going, but even heroes need their own backup team. Olivia has been approved for a service dog that will help her as she navigates her unique life. The catch is that these dogs cost $20,000 to the family which is more than we can afford. We are relying on the help of our “village” of supporters to help our beloved daughter turn this dream into a reality. Thank you for taking the time to read our story.
When Olivia was born, she was a precious gift to our family. Her sisters adored her, and my husband and I were over the moon. We loved everything about her, her smile, her snuggles, and her precious little everything! It was a gift to watch her grow. Unfortunately early on it became apparent that Livis was developing at a slower-than-expected rate. Around 18 months old Livi started a regression, losing several skills such as language and awareness. We were dealing with sleep issues which she has always had but she was inconsolable for hours in the middle of the night. After several doctor’s appointments with no solutions, we took her to the ER where they found hydrocephalus (swelling around the brain). She was taken in an ambulance from St Mary’s to VCU where they put in a shunt from her brain to her abdomen to drain the excess fluid. Her neurosurgeon ordered genetic testing and that’s when we found out she had PMS. In addition to autism-like characteristics, PMS causes developmental delays, nonverbal or limited words, hypotonia, sleep disorders, behavioral problems, difficulty with potty training, pica, and seizures. Also, PMSers, as our community calls them, have a high pain tolerance and sweat less than others putting them at risk of overheating.
Right now Livi is in pre-k where she receives Occupational Therapy, Physical Therapy, and Speech Therapy. She also gets ABA Therapy 4 hours per week at home. We have researched different ways to help Livi along this path and recently discovered 4 Paws for Ability and Autism Support dogs. The ability of these dogs is absolutely amazing and we strongly believe Livi would greatly benefit from an amazing companion. Having a best friend that loves her, can help her communicate with others, support her when things get a bit overwhelming, and increase her independence would be so beneficial for her and our entire family.
Livi is nonverbal (no words, no sign language, and little to no comprehensive language) and an eloper. She will run off at any chance she gets and has no fear or sense of danger. Her service dog will be tethered to her which will keep her safe, anywhere from playing in the backyard with her family to when she is away from us at school. She is unable to walk down steps without assistance so her furry pal will keep her from doing so. She also is very oral sensory seeking (which can be dangerous as she doesn’t know what is safe or unsafe to put in her mouth) and her dog will be able to assist with giving her just the right amount of pressure when she is looking for sensory input or just overloaded and needs help with relaxation. Also, about 40% of children affected with PMS have seizures, and we are grateful at this time Livi is not one of them but if she has them in the future the dog can be trained to sniff out seizures and alert her caregivers to keep her safe. And lastly, Livi has sleep issues, it’s not promised that the dog will help with sleep but it’s said they provide these children with security at night to help them fall back asleep. Her pediatrician even stated at a recent visit, he thinks a service dog will be extremely beneficial to Livi.
Training a service dog is very costly. On average it costs between $40,000-60,000 to raise, train, and place a service dog at 4 Paws for Ability.
We are tasked with raising $20,000 of that amount and we’re hoping that we can receive assistance from our beloved family and friends to help make this a reality. Thank you again for your caring and your support.
Gratefully,
Carly Durvin