The Smith Family
Watching your child suffer is devastating. Being unable to maintain housing security and pay for medical care is a burden no family should have to experience.
In October of 2021, seemingly within a couple weeks, our child developed developmental and behavioral regression, neurological symptoms, stomach aches, rashes, rapid and severe onset OCD and more. We watched our beautifully happy child become overwhelmed by debilitating anxiety and relentless symptoms.
After desperately seeking help from his pediatrician, he still did not receive any treatment for over 8 months. Both his pediatrician and his first neurologist diagnosed that he had PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) but did not initiate treatment. In April of 2022, his pediatrician finally put him on antibiotics and he rapidly improved, however due to lack of experience with the disease, she did not follow the "Standard of Care" guidelines and he was taken back off antibiotics after 10 days. He regressed all over again and she refused to prescribe more.
Terrified and heartbroken, we started treatment with an extremely experienced doctor as well as a new neurologist team in May of 2022. He has been up and down trying to stabilize ever since but initial treatment was long delayed. He continues to have neurological symptoms, debilitating mental health challenges, nutritional deficiencies and restricted eating behaviors and more. He must be protected from illness and germs and continues to have a and impaired immune system.
Training and knowledge about PANS/PANDAS in the medical community varies dramatically which leads to uncertainty and delayed treatments. Costs add up very quickly and are a barrier to recovery. Kinsale's primary doctor is out of network with our medical insurance (as many specialty doctors are) which means appointments and any medication, testing, or treatments she orders are also not covered.
Our 6 year old child has had more medication, testing, blood work, hospital visits, and doctors appointments than most adults will ever endure.
Although he has been improving, we have run out of funds. His care requires both of his parents, as it is too much for 1 person full time. We have used every dollar we had trying to stabilize our son. As of now, we cannot pay rent, electricity or anything else we need.
This journey has been devastating. Trying to fight a complex and serious illness in a very young child is heartbreaking. Having to do so while worrying you'll end up losing your housing is a sickening amount of stress. We would be incredibly grateful for any help we receive to provide our son with the care and security he deserves.