A Seizure Alert Service Dog For Gabrielle

My family is currently trying to raise money to help our daughter Gabrielle get a seizure alert service dog. Please take a few minutes to read about Gabbie’s journey.

When Gabbie was 7 months old, we noticed that she would drop her head suddenly and lose muscle tone. I took her to her family doctor and was told it was behavioral. After a month, we were seeing more of these head drops and knew that something wasn’t right. We took her to the Stollery emergency room, where she received her diagnosis of West Syndrome. West Syndrome is a rare neurological syndrome that is characterized by infantile spasms (clusters of seizures), an abnormal brain wave pattern called hypsarrhythmia and developmental delays. It affects less than 6 babies out of 10,000; it is a rare and severe type of epilepsy. We were given a prescription for the frontline medication and told to stay off of google, and the seizures would stop in 1-2 weeks. Unfortunately, we weren’t that lucky. Within the first 2 months of her diagnosis, Gabbie had up to 120 seizures a day; she would have clusters of up to 50 seizures at a time. She was eventually hospitalized for observation and had more medication added.

Over the past four years, Gabbie has been through an awful lot. She has been seen by four different neurologists and has been mostly a “wait and see” situation with every one of them. We have been searching for the cause of her seizures, but every test comes back with nothing. Gabbie has had three genetic panels done, three MRIs, routine EEGs, a week-long EEG and countless blood tests. There is no genetic, metabolic or structural cause for Gabbie’s condition. At last count, Gabbie has failed 9 different anti-seizure medications as well as the Ketogenic diet. Gabbie has only had 9 seizure-free days since we began tracking them at 8 months.

Gabbie currently is on two different anti-seizure meds as well as a very strict Ketogenic diet and supplements to balance out the side effects of her diet. Her seizures are not under control. She has anywhere from 3-16 a day. Her current diagnosis is: Medically refectory epilepsy with epileptic spasms and developmental delays with non-verbal status and fine motor difficulties. Because Gabbie’s seizures are not under control and the cause is not known, she is at an increased risk for SUDEP (sudden unexplained death in epilepsy).

Gabbie’s long-term prognosis is largely unknown because there are so many unknowns with her condition we don’t know what Gabbie’s future will look like. With the cause of her seizures still unknown, there is the potential for lifelong seizures and ongoing intellectual impairments and the chance that she may remain non-verbal. Gabbie will require significant supports in her daily life.

Gabbie’s medical team has told us that they have 3 more medications that they would like to try, and then they will begin looking at performing brain surgery – a Corpus Collosotomy (where the corpus callosum is cut so that the nerves can’t send seizures between the two halves of the brain).

Now let me tell you about Gabbie.

Gabbie is non-verbal and has significant global developmental delays. She is chronologically 4 years old, but developmentally she is closer to being 2.

Gabbie is one of the gentlest souls to ever walk the Earth. She is sweetness personified and absolutely radiates kind-heartedness. Gabbie spreads joy where ever she goes. She has a way of making you feel special when she offers you one of her small little smiles and big cuddle. Gabbie’s favourite things are to be snuggled, run her motor pathways at home and spend time with her favourite people.

For all her sweetness Gabbie is also a total little spitfire! She can be so mischievous and sassy!

Throughout all of Gabbie’s challenges she remains a happy little girl. She will have a big seizure, come out of it and give us her little smile and a pat, then continue on with whatever she was doing before the seizure. She is incredibly tenacious. She is our little epilepsy warrior in tulle!

We have taken Gabbie to a service dog school to see how she would react to the dogs and to discuss her situation. In the head trainer’s professional opinion, Gabbie would greatly benefit from having a service dog. A dog would be able to alert us to seizures, keep her safe and potentially be able to detect her seizures as they continue to bond. A service dog would also help keep Gabbie calm and regulated, give her some independence, and act as a social bridge between her and her peers. Most importantly, a service dog would provide Gabbie with unconditional love and companionship, and they will help her navigate and make sense of a world that Gabbie can’t always make sense of.

Any donation you can offer will be so appreciated and will go towards Gabbie’s service dog. Thank you

Trisha and Jesse