LuLu and Mom, Lourdes, Discuss Transitioning to St. Theresa

At a young age, LuLu Smith was diagnosed with PCDH19, which is a genetic form of Epilepsy. With the help of family and friends, LuLu was able to raise $14,000 for a seizure dog. Here is what LuLu and her mom, Lordes, had to 

say about the experience:

How did you feel when you found out that you were getting a new dog?

LuLu: Happy.

Lourdes: We were thrilled beyond belief.  Lulu has slept with us since her first seizure.  With PCDH19 the seizures can cause a sudden drop of oxygen, we have to attend to her immediately, thus she was unable to sleep in her own room.  We are hoping that her having a seizure response dog will afford her more independence than she has had up until now.

What is the PCDH19 Alliance and how has it affected LuLu?

Lourdes: The Alliance has been a great support system for our family.  When we got Lulu’s diagnosis, the first thing I did was google PCDH19.  I was able to find the website which connected me with the closed Alliance FB group.  I was connected with other parents who were going through the same thing with their daughters.  It gave me such a wealth of information.  Through the group we are able to share experiences with treatment, medicine side effects, and even fundraising efforts for our seizure dog.  I have been so impressed with the nonprofit that I recently joined the board of directors for the group.  Our hope is to not alone promote awareness of PCDH19, but Epilepsy in general. November is Epilepsy Awareness month but before Lulu, I never even knew that.

What would you like to name your dog?

LuLu: SoSo.

What fun things do you want to do with it?

LuLu: I take him everywhere with me.

What is your favorite part about school?

LuLu: I like everything.  I like friends, I like my teacher.

Lourdes: Lulu was in a developmental preschool and recently transferred to St. Theresa for their new Early Childhood Center Pre­K.  We were worried at first for the transition, but she is doing so well.  The teachers, kids and parents have been so supportive of Lulu.  Lulu wears a protective pink helmet in case she falls with a seizure.  The teachers and many parents also helped with our fundraising efforts.

What do you like to do with your friends and family?

LuLu: I like going to the park, riding bikes and scooters.

Lourdes: Lulu is very active, however we have to be very careful because she can have a seizure at any time.  This past summer she broke her nose due to a fall from a seizure and even had a seizure in the swimming pool.  Getting her a seizure dog will hopefully provide more protection from serious injury.


LuLu is in Pre­Kindergarten at St. Theresa.



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