Help Us Give JPJ a Service Dog

Our son JPJ is five years old, full of personality, determined, funny, and, as so many of his doctors and therapists have called him, a walking miracle.

JPJ was born with Sturge Weber Syndrome, a rare neurological condition caused by abnormal blood vessels affecting the brain. He also has glaucoma and a seizure disorder.

For the first several years of his life, JPJ developed normally and lived the busy, happy life of a little boy. Then, in May, everything changed.

What we initially thought could have been a concussion quickly became a medical emergency. JPJ began having clusters of seizures and stroke like symptoms that eventually left the entire right side of his body paralyzed.

He was rushed from Stamford Hospital and airlifted to Yale New Haven Children’s Hospital.

His seizures became extremely difficult to control. Some lasted for extended periods of time and did not respond to medication. Eventually, doctors had to place JPJ into a medically induced coma while they fought to stop the seizure activity and protect his brain.

We spent 12 days in the ICU and one total month at Yale. After leaving Yale, JPJ was transferred by ambulance to Blythedale Children’s Hospital for two more months of intensive rehabilitation.

He had to work to regain things that had once come so naturally to him. Walking. Balance. Coordination. Strength. Using his right hand. Processing multiple steps. Simply being the independent little boy he had been before all of this happened.

And he fought.

Today, JPJ is home and continuing his recovery through outpatient therapy. His progress has been incredible. But Sturge Weber Syndrome does not go away when you leave the hospital.

One of the hardest things we learned is that JPJ’s seizures are not always something we can see.

While he was in the ICU, continuous EEG monitoring showed seizure activity occurring without obvious outward signs. His doctors have taught us that we must remain vigilant for seizures, stroke like episodes, and sudden neurological changes.

That is where a specially trained service dog could change JPJ’s life.

This dog will be trained specifically around JPJ’s medical needs. The goal is for the dog to recognize and alert us to possible seizure activity, respond when a seizure occurs, and help keep JPJ safe during an episode.

The dog can also be trained to perform lifesaving tasks in an emergency. If JPJ has a seizure during the night, the dog can activate an emergency alert button to wake us. The dog can be trained to retrieve JPJ’s rescue medication and bring it to us when every second matters. The dog can also seek out and alert an adult when JPJ needs help.

For our family, that is huge.

It means another set of eyes and ears during the night. It means another layer of protection as JPJ becomes more independent. And it means allowing him to live his life without Mom and Dad having to be physically beside him every second.

We want JPJ to grow up feeling capable, not afraid. We want him to play, explore, go to school, spend time with friends, sleep in his own room, and experience childhood as independently and safely as possible.

This dog would not simply be a pet.

This dog would have a job.

The process is extensive. The right dog must be carefully bred, matched with JPJ, and professionally trained for his individual medical needs. It can take one to two years before the dog is ready to come home, and that specialized training comes at a significant cost.

Our family has learned a lot throughout this journey, but perhaps the greatest lesson has been total surrender to God.

There were nights when we were on our knees in JPJ’s ICU room praying out loud. We stopped asking God simply to make the suffering disappear and began asking Him to carry JPJ, and all of us, through it.

And He did.

He carried us through extraordinary doctors and nurses, therapists who refused to give up on our little boy, family and friends who stepped in when we couldn’t do it ourselves, and an army of people who prayed for JPJ when we didn’t have the strength to find the words ourselves.

Now we are asking for help with the next chapter.

If you feel called to contribute toward JPJ’s service dog, no amount is too small. If you aren’t able to donate, sharing his story and continuing to pray for him means just as much to our family.

We don’t know exactly what the future holds for JPJ.

But after watching our little boy fight his way back to us, we want to give him every opportunity possible to live safely, confidently, and independently.

Thank you for loving JPJ, praying for him, sharing his story, and helping us give our little walking miracle one more set of paws to walk beside him. ❤️

Training a service dog to meet our child’s requirements can be very costly. On average it costs between $40,000-60,000 to raise, train, and place a service dog at 4 Paws for Ability. While 4 Paws for Ability fundraises to help cover a significant portion of this cost, families are tasked with raising $20,000 of that amount or $23,000 if receiving a poodle, doodle or papillon. We hope that we can receive assistance from our beloved family and friends to help make our service dog dream a reality.