Public Service Announcement

Children are at the greatest risk of contracting Lyme disease and delayed diagnosis can prevent them from living a normal life. Given that children may have a harder time conveying how and what they are feeling, it’s important that parents learn the early signs of Lyme disease, how to identify infections and learn more about treatment protocols in order to avoid long-term illness. Children with Lyme may present with neurological symptoms such as headaches, irritability, sensory sensitivity, depression, anxiety and obsessive compulsive disorder.

In our new PSAs, Project Lyme tells the stories of Rylyn and Pippa, two young children who are recovering from Lyme disease.

---

---

Pippa’s Story

Before Lyme began to devastate her body at 7 years old, Pippa had been living her “best life” playing, dancing, and enjoying wildlife. She dreamed of becoming a violinist, a doctor, and an artist. She loved playing with her friends and family, getting into mischief, and going to school. Pippa’s mom Kelly states “she was always a sassy streak of sunshine and a force to be reckoned with.”

In January 2022, at age 7, Pippa experienced sudden extreme vision loss and was called by the nurse from school. In the months to follow she would experience daily excruciating, full body pain. Then one day Pippa lost the ability to walk and eventually was bound to a wheelchair. She also experienced partial hearing loss and completely lost her ability to speak. Kelly described the house as painfully quiet during that time frame and the family longed to hear her voice once more.

For ten months, her parents took her to many doctors, the ER, and every specialist they thought may help. All the tests came back negative which led Pippa’s pediatrician to diagnose her with “conversion disorder,” a defunct term used to describe patients, usually females, experiencing hysteria or psychological trauma. The current term is Functional Neurological Disorder, and it is a psychological diagnosis often used when doctors just can’t figure out what’s wrong. The Daspit’s knew this was not an accurate diagnosis and continued to fight for answers. Kelly remembers repeatedly telling doctors that they had found ticks on Pippa but was incorrectly told it “couldn’t it be Lyme Disease” because “you can’t get Lyme in Alabama.”

In October 2022, at 8 years old, Pippa stopped being able to hold food down. Her body was shutting down and she was in a near vegetative state. From her hospital bed, Kelly cried out to the world on social media, posting a video of Pippa. She begged for help, praying for anyone to help them figure out what was wrong with their daughter. Within a few days, millions had watched the video, and thousands responded. Dozens of people suggested she had Lyme, but still the doctors at the children’s hospital, where she lay, wasting away and awaiting a feeding tube, refused to consider the possibility of tick-borne infections.

Among the thousands of messages, one in particular stood out. Another Alabama mom told Kelly her daughter had experienced very similar symptoms. Like Pippa, her daughter was told severe physical symptoms were solely psychological before getting a proper Lyme diagnosis. The other mom credited this doctor with saving her child’s life. Unfortunately, due to delays in diagnosis and treatment, her child remains partially permanently paralyzed. Kelly worked to get Pippa released from the hospital, and was able to get worked in with the same Lyme specialist who examined Pippa and finally tested her for Lyme disease.

The following week the Alabama Health Department called to report they had received Pippa’s lab results which were positive for Lyme disease. Within mere days of being on antibiotics, Pippa started improving. She began crawling, eating without vomiting, and could tolerate being touched. After nearly a year of steady decline, Pippa finally began to steadily get better. She can now once again walk, dance, play, eat, see and speak again and continues to fight to overcome residual symptoms.

Rylyn’s Story

After four years of searching for answers, Rylyn was diagnosed with Lyme disease in February 2022. Rylyn’s mother Maureen describes her son “falling off a cliff” and states that he suddenly was no longer the same child. He presented with new OCD, outbursts, rocking behaviors, fatigue, and brain fog among other symptoms. He could no longer make it through the school day, lost friends who simply did not understand, and no longer felt smart. Rylyn would tell his mom there was something wrong with his brain and cried out for her to make it better. Maureen describes living with Lyme as a “childhood interrupted” with lost years searching for answers and seeking recovery.

No one thought to test Rylyn for Lyme because his mother never saw a tick or tell-tale bullseye rash. Rylyn had a prior diagnosis of ADHD so many clinicians attributed his behavior to that diagnosis and solely wanted to treat him with psychiatric medications, even at the age of four.

Eventually correctly diagnosed with Lyme disease, co-infections and mold illness, Rylyn has begun treatment and has experienced some clear signs of improvement. Maureen describes seeing more and more glimpses of Rylan before his crash, giving her hope that his magic will return. She knows he is still in there.

In the face of everything, Rylyn strived to be positive and happy. He is an old soul, an empath, and he went viral during the pandemic for singing Bob Marley’s song “Three Little Birds.”

Rylyn’s symptoms and his story, however, are not over. Maureen encourages parents to never give up on their children and to be a fierce advocate. With a proper diagnosis and treatment, there is hope. Maureen is inspired by this quote from Brene Brown “One day you will tell your story of how you overcame what you went through and it will be someone else’s survival guide.”

Watch Rylyn’s story below.