Jasper Lyons Battle...
Donation protected
Four months ago Matt and Sas Lyon had a beautiful baby boy Jasper. In those 4 short months Jasper Guy has endured more than most people endure in a lifetime. Little Jasper has a rare mutation of a syndrome called Costello, which affects every single cell in his body. Worldwide there are a little more than 300 recorded cases of Costello Syndrome and only two children in the world with the same mutation. He also has a very rare and life-threatening form of epilepsy called SCN1A - Dravet Syndrome and can suffer over 50 seizures per day. He has a tracheostomy to breathe and requires continual oxygen monitoring.
These monumental battles are only some of Jaspers challenges; his full story is listed in detail below. Their beautiful family are separated much of the time while they juggle life between John Hunter Hospital in Newcastle and their home in Port Macquarie where Jaspers 5 year old sister is mid way through her first year of school.
In addition to the immediate expenses Jasper will require 24hr care for the rest of his life and their home will require extensive modifications. Jaspers conditions are both life limiting and the hope is that they will be able to take him home from hospital and focus on bringing him joy and giving him the best quality of life possible.
Matt and Sas haven’t asked for any help but the bills are pilling up and its time we got behind our mates by donating whatever we can to help them through this.
We are aiming to raise enough money to provide some financial relief so they can focus their love and attention on their beautiful family in this extremely tough time.
Jaspers Journey:
Jasper has a mutation of a syndrome called Costello. There is one other child in the world with the same mutation. It's a spontaneous mutation meaning that it has happened in him alone. This syndrome affects every cell in his body. He also has a very rare and life-threatening form of epilepsy called SCN1A - Dravet Syndrome. He is the only reported case of these two presenting together in medical history.
Jasper suffers from: uncontrollable seizures brought on by pain. On his best day he may have 1, on his worst day he may have up to 100.
- Contracted elbows, knees, hands, fingers.
- Rocker bottom feet
- Hip dysplasia
- An increased risk of infant cancer
- An increased risk of moderate to severe intellectual disability
- An increased risk of uncontrolled seizures due to reactions to immunisation leading to brain damage (regardless we are vaccinating him)
- A tracheostomy to give him a safe airway
- A feeding button in his stomach as he suffers from chronic failure to thrive
- Hydrocephalus that has a risk of fluid on the brain
- Resistance to sedation
How it came to be:
Jasper was born on the 15th of March 2019 at 37 weeks to healthy parents. He was delivered by emergency caesarean because his heart wasn't reacting properly to tests. There were no indications that anything was wrong in the scans. He was delivered and the delivery was shown on the big screen which is great when the birth goes well - unfortunately Jasper was born not breathing and with his legs dislocated backwards over his face. That was the first time he nearly died. Matt and Sas were then taken to different parts of the hospital where they thought he had died.
Eventually they were addressed and told that something was wrong and that they would need to wait for specialist treatment to see what it was. Jasper was flown to John Hunter and Sas was taken by road ambulance. Genetic testing kicked off and he became more stable in NICU - his syndrome testing kept coming back negative so they got more confident thinking that all of his muscle and limb issues were just to do with him being squashed in the womb and that this was missed by bad practice on behalf of the radiologists.
After a couple of weeks in NICU they were sent back to the local hospital where they began physio and other therapy to begin settling his hips, elbows, wrists hands and knees (all of which are contracted into the wrong place). He was also having episodes of holding his breath and turning blue, which everyone thought were behavioural and a response to pain. They were discharged home after two weeks and on the fourth day Jasper stopped breathing and Sas resuscitated him. They went to emergency and were flown by chopper back to John Hunter Hospital where they have been since.
For the first week Jasper was resuscitated multiple times, daily. He was diagnosed with having a floppy upper airway and was decided then that he needed a safe airway that wouldn't close when he held his breath so Matt and Sas agreed to a tracheostomy. It is highly unusual in such a small child but this decision literally saved his life. With a safe airway he was able to come off the sedation and to begin getting stronger and learning life on the ventilator, which was breathing for him. Once he stopped being sedated what had previously been thought to be breath holds began to present at seizures and were given the preliminary diagnosis of generalised epilepsy. In the background our incredible geneticist was working on finding out the true cause of Jaspers multiple life issues. Eventually the diagnosis came back and now Matt and Sas are living the life of parents with a child whose syndrome is more rare than rare. "He's a little unicorn and we love him just the way he is".
Jasper is currently cared for by the team in the John Hunter PICU - lead by Corrine Balit, this team of Intensivists have kept him alive against all odds and with two syndromes that are beyond rare.
UPDATE:
.....Jaspers monumental battle continues with a life threatening staph infection in his feeding button and the central IV line that runs to his heart. He's is in an induced coma because he was seizing continually due to the pain of the infection and tomorrow he has a lumbar puncture to see if the infection has spread to his brain. Every day is a new battle and will continue to be the same as long as we can keep him alive.
All contributions are greatly appreciated!
Much love Team Jasper xx
These monumental battles are only some of Jaspers challenges; his full story is listed in detail below. Their beautiful family are separated much of the time while they juggle life between John Hunter Hospital in Newcastle and their home in Port Macquarie where Jaspers 5 year old sister is mid way through her first year of school.
In addition to the immediate expenses Jasper will require 24hr care for the rest of his life and their home will require extensive modifications. Jaspers conditions are both life limiting and the hope is that they will be able to take him home from hospital and focus on bringing him joy and giving him the best quality of life possible.
Matt and Sas haven’t asked for any help but the bills are pilling up and its time we got behind our mates by donating whatever we can to help them through this.
We are aiming to raise enough money to provide some financial relief so they can focus their love and attention on their beautiful family in this extremely tough time.
Jaspers Journey:
Jasper has a mutation of a syndrome called Costello. There is one other child in the world with the same mutation. It's a spontaneous mutation meaning that it has happened in him alone. This syndrome affects every cell in his body. He also has a very rare and life-threatening form of epilepsy called SCN1A - Dravet Syndrome. He is the only reported case of these two presenting together in medical history.
Jasper suffers from: uncontrollable seizures brought on by pain. On his best day he may have 1, on his worst day he may have up to 100.
- Contracted elbows, knees, hands, fingers.
- Rocker bottom feet
- Hip dysplasia
- An increased risk of infant cancer
- An increased risk of moderate to severe intellectual disability
- An increased risk of uncontrolled seizures due to reactions to immunisation leading to brain damage (regardless we are vaccinating him)
- A tracheostomy to give him a safe airway
- A feeding button in his stomach as he suffers from chronic failure to thrive
- Hydrocephalus that has a risk of fluid on the brain
- Resistance to sedation
How it came to be:
Jasper was born on the 15th of March 2019 at 37 weeks to healthy parents. He was delivered by emergency caesarean because his heart wasn't reacting properly to tests. There were no indications that anything was wrong in the scans. He was delivered and the delivery was shown on the big screen which is great when the birth goes well - unfortunately Jasper was born not breathing and with his legs dislocated backwards over his face. That was the first time he nearly died. Matt and Sas were then taken to different parts of the hospital where they thought he had died.
Eventually they were addressed and told that something was wrong and that they would need to wait for specialist treatment to see what it was. Jasper was flown to John Hunter and Sas was taken by road ambulance. Genetic testing kicked off and he became more stable in NICU - his syndrome testing kept coming back negative so they got more confident thinking that all of his muscle and limb issues were just to do with him being squashed in the womb and that this was missed by bad practice on behalf of the radiologists.
After a couple of weeks in NICU they were sent back to the local hospital where they began physio and other therapy to begin settling his hips, elbows, wrists hands and knees (all of which are contracted into the wrong place). He was also having episodes of holding his breath and turning blue, which everyone thought were behavioural and a response to pain. They were discharged home after two weeks and on the fourth day Jasper stopped breathing and Sas resuscitated him. They went to emergency and were flown by chopper back to John Hunter Hospital where they have been since.
For the first week Jasper was resuscitated multiple times, daily. He was diagnosed with having a floppy upper airway and was decided then that he needed a safe airway that wouldn't close when he held his breath so Matt and Sas agreed to a tracheostomy. It is highly unusual in such a small child but this decision literally saved his life. With a safe airway he was able to come off the sedation and to begin getting stronger and learning life on the ventilator, which was breathing for him. Once he stopped being sedated what had previously been thought to be breath holds began to present at seizures and were given the preliminary diagnosis of generalised epilepsy. In the background our incredible geneticist was working on finding out the true cause of Jaspers multiple life issues. Eventually the diagnosis came back and now Matt and Sas are living the life of parents with a child whose syndrome is more rare than rare. "He's a little unicorn and we love him just the way he is".
Jasper is currently cared for by the team in the John Hunter PICU - lead by Corrine Balit, this team of Intensivists have kept him alive against all odds and with two syndromes that are beyond rare.
UPDATE:
.....Jaspers monumental battle continues with a life threatening staph infection in his feeding button and the central IV line that runs to his heart. He's is in an induced coma because he was seizing continually due to the pain of the infection and tomorrow he has a lumbar puncture to see if the infection has spread to his brain. Every day is a new battle and will continue to be the same as long as we can keep him alive.
All contributions are greatly appreciated!
Much love Team Jasper xx
Fundraising team: Team Jasper (8)
Steve Lyon
Organizer
Thrumster NSW
Roz Lyon
Team member
Steve Lyon
Team member
Mike Lyon
Team member
Alisa Angell
Team member
