Our Hero Harper Murnane Needs Some Helping Hands.
Donation protected
Our HERO HARPER was a cheeky normal boy until just a month after his 3rd Birthday he had his first seizure, and it was then on the 6th May 2019 that our lives started to change.
In 2019 Harper required over 30 AMBULANCE TRIPS to HOSPITAL, most requiring LIGHTS AND SIRENS the whole way in due to the severity of his seizure with lots requiring multiple weeks stays after. He has many different types of seizures and during 2019 the seizures continue to increase and it was noticed that Harper had started to lose some of his speech and he was becoming more unsteady on his feet.
The neurologist at the Royal Children’s Hospitals were initially puzzled as to why he continued to have seizure even when on multiple medications that are meant to stop them from occurring. After conducting many tests and investigations we finally had an answer.
On the 18th December 2019 we had the ANSWER to why Harper was having seizures and the other changes that had happened over the first 7 months, it was not the answer we ever wanted, expected or would wish on anyone. It was DEVASTATING NEWS that made our whole world stop spinning, the ANSWER WAS A CRUEL, HORRIBLE AND FATAL CONDITION.
”CLN2 – BATTENS DISESASE”
Harper has CLN2, BATTENS DISEASE, this is an EXTREMELY RARE AND FATAL NEUROLOGICAL condition. The condition is similar to combining dementia, MND, Epilepsy and blindness together and putting it into a child. This meant that Harper would LOSE HIS ABILITY TO WALK, TALK, SEE, EAT, HAVE DEVELOPMENTAL DELAYS, INVOLUNTARY MUSCLE JERKS AND CONTINUE TO HAVE SEIZURES, with the AVERAGE LIFE EXPECTANCY OF 7-10 YEARS OF LIFE.
“LIFE EXPECTANCY FOR A 3 YEAR OLD 7 – 10 YEARS.”
How can any parent/family come to terms with this news. We are all still struggling every day and night.
Haidee, Harper's mum started the Facebook page “Jitterbugs Story” to share the reality of his story and to also make sure that as many people as possible would know his name, condition and cheeky smile. Harper’s parents (Matt and Haidee ) share the hope, heartbreak and the memories they are creating with the LIMITED TIME THEY HAVE WITH THEIR BEAUTIFUL BOY.
BATTEN'S DISEASE HAS NO CURE, THERE IS NO MAGIC PILL OR POTION that can change the decline that will occur, there is a small slither of hope is a drug that is infused fortnightly into a port in Harper’s brain that will hopefully slow the progression of the disease, slow but not stop.
Harper received the port into his brain in January 2020, which has been just one of many operations to try and manage his condition, with Harper receiving his first infusion in February 2020.
2020 came and while we were all in lockdown Matthew and Haidee still had challenging hospital stays. With the lockdowns and hospital visitor restrictions in place only one parent was able to be with Harper, this only INCREASED THE STRESS ON THE FAMILY as they could not be there to support each other and sometimes delayed the other parent from getting updates on his progress.
During this time HARPERS PHYSICAL CONDITION DETERIORATED. The infusion is not slowing down the disease as much as we were all PRAYING for, and his seizures continue with him frequently STOPPING BREATHING during his seizures.
By the END OF 2020 HARPER HAS HAD A HUGE DECLINE in his MOTOR SKILLS, his EYE SIGHT is declining and due to these things plus seizures called MONOCLONIC JERKS that cause his whole body to jerk forward or back he is having FREQUENT FALLS that have caused lots of HEAD INJURIES and BROKEN BONES.
Harper now wears a helmet to try and protect his head, he REQUIRES 1:1 CARE with someone with him at all times, and always holding on to him when walking to limit falls. He sleeps with a monitor on so that his parents or carer can be alerted if he is having a seizure. He needs to be watched when eating as he can choke on his food. He has lost most of his speech, and is losing weight.
Harper in mid 2020 had a PORT PUT INTO THE SIDE OF HIS CHEST to make it easier and quicker to given him emergency medication into his blood when he is having prolonged seizures. Haidee and Matt have since been trained to give this medication at home so they can spend a little bit more time at home and not as much in the hospital but this is a HUGE RESPONSIBILITY FOR HIS PARENTS.
Harper has a ROSTER OF CARERS to help him and his family at home, and between the carers and the medication the parents can give into this blood the family can spend more time at home. However they are still spending a significant amount of time at the hospital due to the UNPREDICTABLE NATURE OF HARPERS CONDITION. Harper STILL REQUIRES LOTS OF AMBULANCE CALLS as his seizures often cause him to STOP BREATHING.
2021 HAS SEEN FURTHER REGRESSION IN HARPER, he is scheduled to have a PEG to help with his feeding and the doctors at the Royal Childrens Hospitals are looking at putting an IMPLANT into his brain to help with his seizures, however this again is not guaranteed to work.
Haidee often referred to Royal Childrens Hospital as “Hotel RCH”, Ambulance trips as “Disco Rides” and her support network as the “Tribe”.
Matt referred to Royal Childrens Hospital as their other “HOME”. One where the staff know Harper and when they are alerted he is coming into emergency, they will often garbage trucks or Peppa Pig on the TV for him to watch while in the resuscitation area.
MATTHEW AND HAIDEE’S LIFE IS HECTIC, managing their work schedules, appointments for Speech therapy, Occupational Therapy, Physiotherapy, Psychology, infusions fortnightly, doctors' appointments for both Harper and Zana, and the roster of support carers who come to support them.
Along their journey Matt and Haidee have been OVERWHELMED with the SUPPORT and LOVE they have received by family, friends and others in their lives and the community.
This Community of People I fondly refer to as their “JITTERBUG COMMUNITY “ Haidee her “TRIBE.”
All through his treatment OUR LITTLE HERO HARPER has been SO BRAVE, COURAGEOUS, MAINTAINED HIS CHEEKY PERSONALITY.
He is such a lovable child who is happy to be cared by the many caring people.
He loves Peppa Pig, Garbage Trucks, Balls, the Richmond Football Club and “Gary” the fish at Hotel RCH.
THIS YEAR HARPER WILL TURN 5, his family wanted to share his party with their Jitterbug Community and to MAKE AS MANY MEMORIES as possible, to have a “100 BIRTHDAYS IN 1” PARTY.
They have invited their “Jitterbug Community” of Family and Friends to celebrate with them and again, they have been overwhelmed with the support for donations to go towards this epic event, the outpouring of love and support has made this birthday really 1 IN A MILLION.
BUT NOW!!!
The time has come for me and the Jitterbug Community to ASK FOR HELP. (Financial Support) Even though it is an uncomfortable position to be in.
Matthew and Haidee are not asking for help. I am asking for help on their behalf.
Matthew and Haidee have been HUMBLED, OVERWHELMED and so VERY GRATEFUL for all the SUPPORT and HELP THEY HAVE RECEIVED THIS FAR.
Matthew and Haidee are a LOVING, STRONG INDEPENDENT COUPLE wanting the best, THE VERY BEST for their family. A family who has had to ENDURE MORE THAN THEY SHOULD.
A FAMILY Full of LOVE, HOPE and DREAMS for their future of their children.
“BE A HERO AND HELP US HELP OUR HERO HARPER.”
What your contributions will be put towards is:
Matt and Haidee need to purchase a LARGER FAMILY CAR to have modified to transport their family as well as carers that are now required to support Harper and their family. So they can keep having adventures to keep making memories that they can treasure. (It will not be long before Harper will be reliant on being in a Wheelchair)
Their main family car is getting older and unreliable. (One day when we were visiting from Mildura Matthew was at the hospital with Harper, Haidee on her way home broke down on the Freeway. It was late and dark, luckily, we were visiting and were able to wait with Haidee on the dark cold freeway, waiting for a tow. Their car on this occasion could be fixed.)
This FINANCIAL SUPPORT we are asking for will also mean that Haidee and Matthew may not need to work as many shifts, to stay HOME and CARE for Harper, when he NEEDS THEM THE MOST, BE BY HIS SIDE. They are the ones who know his seizures and manage care the best.
Finally, Greg and I (Kerryn Murnane) would like to THANK YOU for taking the time to read our story and for thinking of us.
We are just an ordinary hard working Australian Family. We have felt very blessed to have the LOVE and SUPPORT of our FAMILY which has always been important to us.
We now are filled with the ENORMOUS GRIEF and HEARTACHE for our Son Matthew, his wife Haidee and granddaughter Zana. They are living everyday with the “TORTURE” of watching the decline of Harper.
BUT they always look on the positives, the bright side and are filled with the LOVE and JOY of having HARPER (That cheeky, mischievous Boy, with a SMILE that lights up all of our world and melts our heart)
And their wish is to MAKE EACH AND EVERYDAY THEY HAVE LEFT WITH HIM AS SPECIAL AND MEMORABLE AS CAN BE.
Help Me and our Jitterbug Community
“BE A HERO AND HELP US HELP OUR HERO HARPER.”
Make a Donation TODAY!
Each and every donation is received with SINCERE APPRECIATION.
“THANK YOU” AGAIN
KERRYN AND GREG MURNANE
ON BEHALF OF OUR SON MATTHEW, HIS WIFE HAIDEE
AND THEIR CHILDREN ZANA 8 YRS AND HARPER 4 YRS. (OUR HEROS)
In 2019 Harper required over 30 AMBULANCE TRIPS to HOSPITAL, most requiring LIGHTS AND SIRENS the whole way in due to the severity of his seizure with lots requiring multiple weeks stays after. He has many different types of seizures and during 2019 the seizures continue to increase and it was noticed that Harper had started to lose some of his speech and he was becoming more unsteady on his feet.
The neurologist at the Royal Children’s Hospitals were initially puzzled as to why he continued to have seizure even when on multiple medications that are meant to stop them from occurring. After conducting many tests and investigations we finally had an answer.
On the 18th December 2019 we had the ANSWER to why Harper was having seizures and the other changes that had happened over the first 7 months, it was not the answer we ever wanted, expected or would wish on anyone. It was DEVASTATING NEWS that made our whole world stop spinning, the ANSWER WAS A CRUEL, HORRIBLE AND FATAL CONDITION.
”CLN2 – BATTENS DISESASE”
Harper has CLN2, BATTENS DISEASE, this is an EXTREMELY RARE AND FATAL NEUROLOGICAL condition. The condition is similar to combining dementia, MND, Epilepsy and blindness together and putting it into a child. This meant that Harper would LOSE HIS ABILITY TO WALK, TALK, SEE, EAT, HAVE DEVELOPMENTAL DELAYS, INVOLUNTARY MUSCLE JERKS AND CONTINUE TO HAVE SEIZURES, with the AVERAGE LIFE EXPECTANCY OF 7-10 YEARS OF LIFE.
“LIFE EXPECTANCY FOR A 3 YEAR OLD 7 – 10 YEARS.”
How can any parent/family come to terms with this news. We are all still struggling every day and night.
Haidee, Harper's mum started the Facebook page “Jitterbugs Story” to share the reality of his story and to also make sure that as many people as possible would know his name, condition and cheeky smile. Harper’s parents (Matt and Haidee ) share the hope, heartbreak and the memories they are creating with the LIMITED TIME THEY HAVE WITH THEIR BEAUTIFUL BOY.
BATTEN'S DISEASE HAS NO CURE, THERE IS NO MAGIC PILL OR POTION that can change the decline that will occur, there is a small slither of hope is a drug that is infused fortnightly into a port in Harper’s brain that will hopefully slow the progression of the disease, slow but not stop.
Harper received the port into his brain in January 2020, which has been just one of many operations to try and manage his condition, with Harper receiving his first infusion in February 2020.
2020 came and while we were all in lockdown Matthew and Haidee still had challenging hospital stays. With the lockdowns and hospital visitor restrictions in place only one parent was able to be with Harper, this only INCREASED THE STRESS ON THE FAMILY as they could not be there to support each other and sometimes delayed the other parent from getting updates on his progress.
During this time HARPERS PHYSICAL CONDITION DETERIORATED. The infusion is not slowing down the disease as much as we were all PRAYING for, and his seizures continue with him frequently STOPPING BREATHING during his seizures.
By the END OF 2020 HARPER HAS HAD A HUGE DECLINE in his MOTOR SKILLS, his EYE SIGHT is declining and due to these things plus seizures called MONOCLONIC JERKS that cause his whole body to jerk forward or back he is having FREQUENT FALLS that have caused lots of HEAD INJURIES and BROKEN BONES.
Harper now wears a helmet to try and protect his head, he REQUIRES 1:1 CARE with someone with him at all times, and always holding on to him when walking to limit falls. He sleeps with a monitor on so that his parents or carer can be alerted if he is having a seizure. He needs to be watched when eating as he can choke on his food. He has lost most of his speech, and is losing weight.
Harper in mid 2020 had a PORT PUT INTO THE SIDE OF HIS CHEST to make it easier and quicker to given him emergency medication into his blood when he is having prolonged seizures. Haidee and Matt have since been trained to give this medication at home so they can spend a little bit more time at home and not as much in the hospital but this is a HUGE RESPONSIBILITY FOR HIS PARENTS.
Harper has a ROSTER OF CARERS to help him and his family at home, and between the carers and the medication the parents can give into this blood the family can spend more time at home. However they are still spending a significant amount of time at the hospital due to the UNPREDICTABLE NATURE OF HARPERS CONDITION. Harper STILL REQUIRES LOTS OF AMBULANCE CALLS as his seizures often cause him to STOP BREATHING.
2021 HAS SEEN FURTHER REGRESSION IN HARPER, he is scheduled to have a PEG to help with his feeding and the doctors at the Royal Childrens Hospitals are looking at putting an IMPLANT into his brain to help with his seizures, however this again is not guaranteed to work.
Haidee often referred to Royal Childrens Hospital as “Hotel RCH”, Ambulance trips as “Disco Rides” and her support network as the “Tribe”.
Matt referred to Royal Childrens Hospital as their other “HOME”. One where the staff know Harper and when they are alerted he is coming into emergency, they will often garbage trucks or Peppa Pig on the TV for him to watch while in the resuscitation area.
MATTHEW AND HAIDEE’S LIFE IS HECTIC, managing their work schedules, appointments for Speech therapy, Occupational Therapy, Physiotherapy, Psychology, infusions fortnightly, doctors' appointments for both Harper and Zana, and the roster of support carers who come to support them.
Along their journey Matt and Haidee have been OVERWHELMED with the SUPPORT and LOVE they have received by family, friends and others in their lives and the community.
This Community of People I fondly refer to as their “JITTERBUG COMMUNITY “ Haidee her “TRIBE.”
All through his treatment OUR LITTLE HERO HARPER has been SO BRAVE, COURAGEOUS, MAINTAINED HIS CHEEKY PERSONALITY.
He is such a lovable child who is happy to be cared by the many caring people.
He loves Peppa Pig, Garbage Trucks, Balls, the Richmond Football Club and “Gary” the fish at Hotel RCH.
THIS YEAR HARPER WILL TURN 5, his family wanted to share his party with their Jitterbug Community and to MAKE AS MANY MEMORIES as possible, to have a “100 BIRTHDAYS IN 1” PARTY.
They have invited their “Jitterbug Community” of Family and Friends to celebrate with them and again, they have been overwhelmed with the support for donations to go towards this epic event, the outpouring of love and support has made this birthday really 1 IN A MILLION.
BUT NOW!!!
The time has come for me and the Jitterbug Community to ASK FOR HELP. (Financial Support) Even though it is an uncomfortable position to be in.
Matthew and Haidee are not asking for help. I am asking for help on their behalf.
Matthew and Haidee have been HUMBLED, OVERWHELMED and so VERY GRATEFUL for all the SUPPORT and HELP THEY HAVE RECEIVED THIS FAR.
Matthew and Haidee are a LOVING, STRONG INDEPENDENT COUPLE wanting the best, THE VERY BEST for their family. A family who has had to ENDURE MORE THAN THEY SHOULD.
A FAMILY Full of LOVE, HOPE and DREAMS for their future of their children.
“BE A HERO AND HELP US HELP OUR HERO HARPER.”
What your contributions will be put towards is:
Matt and Haidee need to purchase a LARGER FAMILY CAR to have modified to transport their family as well as carers that are now required to support Harper and their family. So they can keep having adventures to keep making memories that they can treasure. (It will not be long before Harper will be reliant on being in a Wheelchair)
Their main family car is getting older and unreliable. (One day when we were visiting from Mildura Matthew was at the hospital with Harper, Haidee on her way home broke down on the Freeway. It was late and dark, luckily, we were visiting and were able to wait with Haidee on the dark cold freeway, waiting for a tow. Their car on this occasion could be fixed.)
This FINANCIAL SUPPORT we are asking for will also mean that Haidee and Matthew may not need to work as many shifts, to stay HOME and CARE for Harper, when he NEEDS THEM THE MOST, BE BY HIS SIDE. They are the ones who know his seizures and manage care the best.
Finally, Greg and I (Kerryn Murnane) would like to THANK YOU for taking the time to read our story and for thinking of us.
We are just an ordinary hard working Australian Family. We have felt very blessed to have the LOVE and SUPPORT of our FAMILY which has always been important to us.
We now are filled with the ENORMOUS GRIEF and HEARTACHE for our Son Matthew, his wife Haidee and granddaughter Zana. They are living everyday with the “TORTURE” of watching the decline of Harper.
BUT they always look on the positives, the bright side and are filled with the LOVE and JOY of having HARPER (That cheeky, mischievous Boy, with a SMILE that lights up all of our world and melts our heart)
And their wish is to MAKE EACH AND EVERYDAY THEY HAVE LEFT WITH HIM AS SPECIAL AND MEMORABLE AS CAN BE.
Help Me and our Jitterbug Community
“BE A HERO AND HELP US HELP OUR HERO HARPER.”
Make a Donation TODAY!
Each and every donation is received with SINCERE APPRECIATION.
“THANK YOU” AGAIN
KERRYN AND GREG MURNANE
ON BEHALF OF OUR SON MATTHEW, HIS WIFE HAIDEE
AND THEIR CHILDREN ZANA 8 YRS AND HARPER 4 YRS. (OUR HEROS)
Organizer
Kerryn Murnane
Organizer
Mildura, VIC