The PACE Radio Show - Guest: Kaylee and Nick Jones - Hosts: Tamara & Al

Tonight Kaylee and Nick join us to talk about their daughter Sophie, as they try to raise awareness and help find a solution for their daughter's medication.

"Sophie Jones was born with a rare chromosome deletion/abnormalities. Malan Syndrome and CACNA1A causes epilepsy, ataxia, hemiplegic migraines, autism, anxiety, low muscle tone and many other challenges she has to face daily. Sophie uses a wheelchair and walker to get around, she is nonverbal but very vocal and loves to use the eye gaze/touch screen technology to communicate. She is a happy go lucky girl that loves wiping wheelies, donuts, spinning fast in her swing. Loves scaring her parents by going as fast as she can and listening/dancing to music.

Sophie’s seizures started after her 3rd birthday that came on very strong. Coming in clusters lasting 5 minutes of turning blue in the lips, puking and having tonic-clonic seizures. Longest cluster was up to 45 minutes long and they wouldn’t stop until a rescue medication was administered. She tried 3 different medications to help her seizures. Which is all we were told we would be able to do for her. Since her seizures are life threatening.

The seizures weren’t stopping on clobazam, trileptal and keppra. Having to still administer rescue medication to stop the clusters and traveling by ambulance 2-3 times a week. She also had bad side effects from all the anti-epileptic drugs causing red rash, hives, night terrors, loss of balance and no appetite. Her neurologist let us try CBD oil even though the cost wasn’t something we could really afford and he didn’t believe it would help. His words were “It could make them worse for her.” But we really thought it would give better results for her over the keto diet since there are more side effects to be had such as ketosis, stress to the kidneys, dangerously low blood sugars, digestive issues and changes in gut health and may increase the risk of early death.

Sophie has been on CBD oil for 3 years in December. Her seizures don’t come in clusters, are not even a minute long now and her recovery time has improved drastically. We haven’t had to use rescue medication or call for an ambulance since March 2020. She has such a better quality of life now. She was sleeping 2 to 3 days to recover and now she is going 2 to 3 days without a nap, is trying to talk more, eats great, sleeps all night. She doesn’t need days to recover now and is so much more alert compared to before.

Direct Family home support/ disability supports will not cover her medication due to the fact that it is not within their policy because it’s not covered under pharmacare. They would pay for every ambulance bill, every anti-epileptic drugs and rescue medication. Each ambulance bill was almost $130 each time and we were going 2 to 3 times a week to get the clusters to stop. Thankfully we had community support with helping cover her medication but unfortunately with her medication costing $567 a month and if we didn’t have her youth program it would be $1200 a month.
All we want for our strong beautiful girl is a quality of life !

We are hoping to either find a solution for her medication long term or make it happen ourselves by starting up a nonprofit grow operation for pedication patients just like Sophie.
In the middle of a healthcare and ambulance crisis, keeping Sophie out of hospitals and ambulances isn’t just a good plan, it is the only smart, economical, long term plan.

The option is there, we just need enough people to do the right thing and give us and other families like us the help our children need to keep them thriving, living the closest to a normal childhood that we can give them. No kid deserves to live in and out of hospitals, especially when the thing that could keep them out is available, just not affordable to any regular middle class family.

It’s time to end the stigma around this and show everyone how much this is helping our children.

We are hoping with the community's support we will fill this petition so Chris Palmer our MLA can present it in the Nova Scotia House of Assembly/Government and for the Health Minister of Nova Scotia to see how much support we would have to make this happen for not just Sophie."

Tune In every Wednesday night at 8pm ET / 5pm PST to catch our LIVE show on the PACE Radio Network’s Facebook pages, Twitter and our YouTube channel. Audio and video are podcasted afterwards at http://PACEradio.net and http://PACEradioShow.com

Thank you to our sponsors....

Legacy 420 located on the Tyendinaga Mohawk Territory in Ontario https://legacy420.com/

Campbellford Lifestyle Shop in Campbellford Ontario

#thepaceradioshow #paceradionetwork