Jonty's mum is a Paramedic, and we (as fellow-paramedics) felt we had to help her in this effort.
Jonty has severe uncontrolled generalised Epilepsy, and his condition is worsening
He was diagnosed with Epilepsy at 14 months, but despite having been prescribed 9 anti-convulsant medications, his Epilepsy has never been under control, and experiences seizures frequently and regularly. The family have been told that he will never grow out of this condition, and in fact his condition is degenerative. He has already had learning regression in language and literacy, and this will impact him greatly in the future. Jonty has endured more than any 8 year-old should, and will never have the freedom that his friends do). Despite this he has borne it all with a smile and a wonderful attitude. You can see this in his photgraphs.
However Jonty's family has lately been given some devastating news. Jonty is now at high risk of Sudden Unexplained Death of an Epileptic Person (SUDEP).
This means that he must now have a cardiac and oxygen monitor when he sleeps as well as an Epilepsy dog. This will enable continuous monitoring of his vital signs, and will sound an alarm should his heart or oxygen levels be affected by subtle seizures (the kind that puts him at greatest risk of SUDEP). The Epilepsy dog will pick up any seizure activity day and night. These will give this family some much-needed peace of mind that life-threatening incidents will be picked up. The cost of these two things is $25,000. They are needed as soon as possible.
This family have had to endure a massive drain on their finances with Physio, Speech, Occupational Therapy, Optometry and Psychology therapy, as well as other medical expenses. They cannot also come up with the funds for both these items.
Following are Tanie's words (Jonty's Mum):
"I will never forget the day that our lives as we knew it changed forever. It started as a normal day for us, Jonty & I had been to Beauty Park in Frankston, he ran, jumped, climbed and giggled the morning away, nothing seemed at all out of the ordinary, he was well, no signs of illness. We arrived home for his usual afternoon sleep. Sometime after I put him down, I heard a blood curdling high pitched squeal, a loud thump & then the sound of my little toddler jerking uncontrollably no longer in control of his little body. Seconds felt like minutes & minutes hours, even though I was a Paramedic & had treated patients having seizures I had no idea what to do. It was my baby & I wasn’t at work. "
"We are so thankful for the generosity, support and kindness that is being given to our family, we are forever indebted to you & will never forget this. All funds raised will go towards giving Jonty the best future possible, it will give him freedom and independence, it will give us the ability to monitor him overnight, to be alerted when he is having a subtle seizure (the type that put him at greatest risk of SUDEP), it will give us some sense of feeling more at ease, more comfort that he is safe and sleep that is less broken. All funds raised will go towards Jonty and his needs, any money raised over and above the target will be put towards further medical intervention, devices or therapies - giving Jonty the best future possible. "
Thanks once again for all of your wonderful efforts.
- Bianca Vernon
- Ellen Baker
- Jo Bassett
- Vicky Savona
- Adam Sontag
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