Charlotte to travel to Toronto for medical care

Hello,

My name is Al Grant, my partner Shana Holloran and I are asking for help trying to get our daughter the Healthcare she desperately needs and deserves.

Our daughter Charlotte has been suffering with severe medication resistant epilepsy for 4 years now. This is caused by a rare gene mutation. She has several different types of seizures, including: tonic-clonic, absent, tonic and atonic seizures. Currently, New Brunswick has a severe shortage of specialized healthcare workers capable of understanding Charlotte's complex seizure disorder, and her health is constantly declining. She has over 100 seizures a day and is in and out of the local hospital. The local hospital has no awareness of seizures disorders and views us as a waste of hospital resources and she is constantly being discharged in worse condition than she arrives, without a health plan to path forward. Currently, we cannot phone our neurologist, we must email and can wait up to a week for a response. During that week, her health deteriorates significantly.

The continuous lack of support and answers have begun to have a severe impact on her development. She is being over-medicated, and the side-effects have caused her to regress on her development. She used to be able to ride a bicycle on training wheels, but now she cannot balance without falling off. She drools constantly and has trouble swallowing her food. She cannot walk without falling into things. When she speaks she slurs all of her words and often trails off mid-sentence. She now lacks bladder control and requires diapers full time when previously she was potty trained and could last the night without wetting herself. This is tragic because these are things she was capable of doing just a few months ago. However the over-medication and constant seizures have caused such a deterioration of her motor skills, she is no longer capable of doing things she once was able to.

Recently we traveled to Toronto to visit family earlier this month, and Charlotte had a flare up having many seizures. We brought her to Toronto Sick Kids and were surprised to see 2 pediatric neurologists and an epileptologist within 2.5 hours of admittance. They were unable to help long term without her medical records and a referral. We believe that the above issues would be avoided if we had access to the Doctors and Resources at Toronto Sick Kids healthcare facilities.

We believe that with access to these physicians and resources, Charlotte will be properly treated, provided alternative medications. All within a quicker turnaround time and constant communication with these neurologists.

We are requesting a referral and hoping to raise the funding needed to temporarily relocate to Toronto Sick Kids region, in order to get direct access to these physicians and resources. We truly believe making this temporary move will finally help us get the answers Charlotte needs to continue developing, and striving. This funding will be going to obtaining an apartment in the GTA to temporarily relocate there for 6 months.

Please help us get her the help she desperately needs, as our local healthcare system has failed us.

Love,

Charlotte, Al, Shana & brother Chase.