Reeve's battle with Cerebral Palsy
Donation protected
Let me introduce this charming and cheeky little boy, Reeve Rogers who is 6 months old. Along with Reeve I would like to introduce the Rogers family including Peter, Bridget and Reeve’s older brother Chase who is 6 years old.
Three weeks ago, little Reeve was diagnosed with Spastic Right Hemiplegia Cerebral Palsy. The cause is likely to be an ischemic stroke while in utero. The damage to his brain is severe and confronting to look at but important to see just how much of his brain has been damaged from the stroke. Only time will tell how much or little this little boy will ever be able to do, meaning will he or won’t he be able to move, talk or walk.
When Reeve started showing signs that he wasn't meeting his milestones the family saw an OT who had major concerns. The next day, Reeve was admitted to hospital where a trans-cranial brain probe was performed which showed a large mass on the left hand side of Reeves brain. He was then rushed into a brain MRI which sadly confirmed this diagnosis.
I admit, when my dear friend told me of her devastating news with her little boy, I didn’t know a lot about Cerebral Palsy. In the last three weeks I have learnt about the cruel nature of this condition and it’s worrying outcomes for not only this little boy but the whole family.
Cerebral palsy is an umbrella term that refers to a group of disorders affecting a person’s ability to move. Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. People who have cerebral palsy may also have visual, learning, hearing, speech, epilepsy and intellectual impairments.
Although cerebral palsy is a permanent life-long condition, some of these signs of cerebral palsy can improve or worsen over time.
The word IMPROVE is the word this family is clinging onto!
Reeve’s future at six months old is already looking glim. He is unable to roll, hold his head up, unable to sit and has lost the use of his right arm and hand already. The specialists have concerns with the vision from his right eye and also his hearing. Reeve is booked into have an EEG soon as they believe he has already had at least one seizure. He is unable to swallow correctly and is not meeting any of his gross and fine motor milestones.
Family History / Background
In 2011 Chase was born and from early on he had complications. He was diagnosed with hypothyroidism, dysphagia and low muscle tone. He has since been diagnosed with a speech and language impairment. He underwent weekly therapies, was NG tube fed, attended interstate specialists appointments, had six surgeries and a range of different genetic tests all funded solely by Peter and Bridget. During this time Peter got a job working away and was only home 5 days a month just to make ends meet and pay for all the intervention that Chase required. Chase still has weekly therapies to assist with his challenges, however he has come a long way due to the fight both his parents battled for him.
In June 2017 when Bridget found out she was pregnant, it was a pleasant surprise but also one that concerned her deeply given Chase’s background. Peter and Bridget underwent every test possible to ensure they were not facing another child with medical complications. During utero they did find out that Reeve had a VSD ventricula septal defect of the heart, it was monitored closely but they were assured it was nothing to worry about and at worst case scenario Reeve may need surgery to correct this. There were celebrations and the excitement began.
At four months it was advised that Reeve see the paediatric cardiologist to consider surgery as his VSD had become worse. Reeve is currently on the waiting list to see a surgeon.
Now with this recent news, the family and loved ones are in shock, the specialists were in shock. How could this possibly happen to this family when they have already faced so many challenges with their first born?
Along with therapies already required for Chase, this time the family are looking at a life limiting disability.
What needs to be now?
It has been recommended that Reeve commences intensive therapy until the age of 13, which is when he would have reached his peak and his state at this age will be his future.
Intensive therapies to name a few include, OT, Physio, Speech, and Neurologist. Why Speech Therapy so early?? Yes I know I asked the same question! This therapy is not just focused on speech, but rather teach Reeve to manipulate his mouth and tongue which will assist him with eating – right now it is unknown if he will need to be tube fed. At this stage he can swallow formula but is unable to manipulate his mouth to accept solids. He may require a NG feeding tube or peg for life if he is unable to do this.
At this stage the family are going to start with 3 therapy sessions per week, along with performing their own therapies at home 3 times a day. The care and regime of therapies suggested means that Bridget is unable to return to work.
Reeve is also on a waiting list for Hand and Leg splints which will also come with its own set of therapies when these are worn. Reeve was three weeks away from receiving a hand splint due to his thumb in fist, however once a formal diagnosis was received he sadly was removed from the waiting list and placed on a Cerebral Palsy waiting list in Brisbane.
The average cost of 3 therapies per week is $650.
What about private health or funding?
The Rogers have private health cover but there is always a gap, and when doing these sessions weekly for the next 13 years, the amount of cover won’t last for long.
Reeve has been able to register for Better Start funding and will receive a once off payment FOR LIFE of $6k. Yes this will assist but only for the next 9 weeks! NDIS funding – unfortunately this is not available on the Gold Coast as of yet and may not be available for over 12 months…..
Before even leaving the hospital Bridget was handed a form which promoted crowd funding such as this website, Bridget was mortified as she has private health and she does not ask or accept help from anyone. The hospital warned her this would be beneficial to her family as the costs for Reeve’s therapies and equipment requirements would be large and over 80% of this would need to be self-funded.
Possibilities for Reeve in the future
Botox Injections: Once Reeve is two, he will be able to undergo these therapies with the hope of reducing the spasticity of his limbs.
Early Intervention Programs specialising with Cerebral Palsy in a one stop shop module: Bridget is in contact NAPA Centre located in Sydney, they have had some very positive outcomes for children with Cerebral Palsy as part of their early intervention program. Their therapy involves treating patients 2-6 hours a day, 5 days a week for three weeks. This would mean Bridget and Reeve travel to Sydney and stay for three weeks, costs for the therapy, accommodation, food and travel to get there will be required. For further information please see www.napacentre.com.au
Life changing surgery: Selective Dorsal Rhizotomy (SDR) surgery performed in St Louis, USA. Dr TS Park and his team are world leaders in this procedure that involves the identification and severing of the sensory nerves causing spasticity in the lower limbs. 39 children from Australia have already undergone this surgery with a 100% success rate. The cost for this is surgery and the recovery is approximately $150k aud. For more details on this surgery please see www.stlouischildrens.org/our-services/centre-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr
Although there is no concrete research yet to say if therapies will or will not assist Reeve – the studies do show that being that he is an infant, Neuroplastisity is Reeve’s best hope. This is an empty part of the brain that can take over in very young children and perform some of the tasks the damaged brain can no longer do.
As any family would, the Rogers want to give Reeve the best possible treatment they can to try and assist with providing Reeve with some quality of life and the family with hope. Most importantly to give Reeve the best chance at reducing the symptoms of this life long debilitating condition.
I know there is A LOT of information in this story, but I wanted not only to explain this beautiful families horrible situation but also educate about Cerebral Palsy.
Bridget recently broke down to me and I will quote “I was lying in bed with Reeve this morning and he was smiling, for a moment I forgot about his diagnosis, but then I remembered, he may not be able to smile tomorrow” this broke my heart, as a mother I can’t imagine what this family is experiencing and yet to endure.
Just quickly, let me introduce myself, I am Amanda Summerfield and I live in Ormeau, on the Gold Coast, Australia. I became close friends with Bridget when our two boys started school together last year, a friendship I cherish. You know when you meet someone, and you just instantly bond - it's as if we have been friends for 20 years!
The family and I would like to THANK YOU for taking the time to read their story, and if you are able to donate anything to assist this family even in a small way – they would be forever grateful. This family does not ask for help, nor accept it easily, but this time they have no choice, they need help. As a close friend I had to do something to try and relieve the huge financial pressures they have ahead.
Any funds raised will be deposited directly into a seperate bank account in both Peter and Bridget's name to withdraw from once their Better Start Funding of $6k, has been used for the weekly therapy sessions which we estimate to be approximately 9 weeks! Reeve has already begun these sessions. In the future we are hoping Reeve will be accepted for treatment at the NAPA Centre in Sydney, and a candidate for the life changing operation in the US hence our goal target, the costs for both of these are not something the family can afford.
Watch this space for updates on how little Reeve is doing, he is a fighter we just need to help him fight.
Three weeks ago, little Reeve was diagnosed with Spastic Right Hemiplegia Cerebral Palsy. The cause is likely to be an ischemic stroke while in utero. The damage to his brain is severe and confronting to look at but important to see just how much of his brain has been damaged from the stroke. Only time will tell how much or little this little boy will ever be able to do, meaning will he or won’t he be able to move, talk or walk.
When Reeve started showing signs that he wasn't meeting his milestones the family saw an OT who had major concerns. The next day, Reeve was admitted to hospital where a trans-cranial brain probe was performed which showed a large mass on the left hand side of Reeves brain. He was then rushed into a brain MRI which sadly confirmed this diagnosis.
I admit, when my dear friend told me of her devastating news with her little boy, I didn’t know a lot about Cerebral Palsy. In the last three weeks I have learnt about the cruel nature of this condition and it’s worrying outcomes for not only this little boy but the whole family.
Cerebral palsy is an umbrella term that refers to a group of disorders affecting a person’s ability to move. Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. People who have cerebral palsy may also have visual, learning, hearing, speech, epilepsy and intellectual impairments.
Although cerebral palsy is a permanent life-long condition, some of these signs of cerebral palsy can improve or worsen over time.
The word IMPROVE is the word this family is clinging onto!
Reeve’s future at six months old is already looking glim. He is unable to roll, hold his head up, unable to sit and has lost the use of his right arm and hand already. The specialists have concerns with the vision from his right eye and also his hearing. Reeve is booked into have an EEG soon as they believe he has already had at least one seizure. He is unable to swallow correctly and is not meeting any of his gross and fine motor milestones.
Family History / Background
In 2011 Chase was born and from early on he had complications. He was diagnosed with hypothyroidism, dysphagia and low muscle tone. He has since been diagnosed with a speech and language impairment. He underwent weekly therapies, was NG tube fed, attended interstate specialists appointments, had six surgeries and a range of different genetic tests all funded solely by Peter and Bridget. During this time Peter got a job working away and was only home 5 days a month just to make ends meet and pay for all the intervention that Chase required. Chase still has weekly therapies to assist with his challenges, however he has come a long way due to the fight both his parents battled for him.
In June 2017 when Bridget found out she was pregnant, it was a pleasant surprise but also one that concerned her deeply given Chase’s background. Peter and Bridget underwent every test possible to ensure they were not facing another child with medical complications. During utero they did find out that Reeve had a VSD ventricula septal defect of the heart, it was monitored closely but they were assured it was nothing to worry about and at worst case scenario Reeve may need surgery to correct this. There were celebrations and the excitement began.
At four months it was advised that Reeve see the paediatric cardiologist to consider surgery as his VSD had become worse. Reeve is currently on the waiting list to see a surgeon.
Now with this recent news, the family and loved ones are in shock, the specialists were in shock. How could this possibly happen to this family when they have already faced so many challenges with their first born?
Along with therapies already required for Chase, this time the family are looking at a life limiting disability.
What needs to be now?
It has been recommended that Reeve commences intensive therapy until the age of 13, which is when he would have reached his peak and his state at this age will be his future.
Intensive therapies to name a few include, OT, Physio, Speech, and Neurologist. Why Speech Therapy so early?? Yes I know I asked the same question! This therapy is not just focused on speech, but rather teach Reeve to manipulate his mouth and tongue which will assist him with eating – right now it is unknown if he will need to be tube fed. At this stage he can swallow formula but is unable to manipulate his mouth to accept solids. He may require a NG feeding tube or peg for life if he is unable to do this.
At this stage the family are going to start with 3 therapy sessions per week, along with performing their own therapies at home 3 times a day. The care and regime of therapies suggested means that Bridget is unable to return to work.
Reeve is also on a waiting list for Hand and Leg splints which will also come with its own set of therapies when these are worn. Reeve was three weeks away from receiving a hand splint due to his thumb in fist, however once a formal diagnosis was received he sadly was removed from the waiting list and placed on a Cerebral Palsy waiting list in Brisbane.
The average cost of 3 therapies per week is $650.
What about private health or funding?
The Rogers have private health cover but there is always a gap, and when doing these sessions weekly for the next 13 years, the amount of cover won’t last for long.
Reeve has been able to register for Better Start funding and will receive a once off payment FOR LIFE of $6k. Yes this will assist but only for the next 9 weeks! NDIS funding – unfortunately this is not available on the Gold Coast as of yet and may not be available for over 12 months…..
Before even leaving the hospital Bridget was handed a form which promoted crowd funding such as this website, Bridget was mortified as she has private health and she does not ask or accept help from anyone. The hospital warned her this would be beneficial to her family as the costs for Reeve’s therapies and equipment requirements would be large and over 80% of this would need to be self-funded.
Possibilities for Reeve in the future
Botox Injections: Once Reeve is two, he will be able to undergo these therapies with the hope of reducing the spasticity of his limbs.
Early Intervention Programs specialising with Cerebral Palsy in a one stop shop module: Bridget is in contact NAPA Centre located in Sydney, they have had some very positive outcomes for children with Cerebral Palsy as part of their early intervention program. Their therapy involves treating patients 2-6 hours a day, 5 days a week for three weeks. This would mean Bridget and Reeve travel to Sydney and stay for three weeks, costs for the therapy, accommodation, food and travel to get there will be required. For further information please see www.napacentre.com.au
Life changing surgery: Selective Dorsal Rhizotomy (SDR) surgery performed in St Louis, USA. Dr TS Park and his team are world leaders in this procedure that involves the identification and severing of the sensory nerves causing spasticity in the lower limbs. 39 children from Australia have already undergone this surgery with a 100% success rate. The cost for this is surgery and the recovery is approximately $150k aud. For more details on this surgery please see www.stlouischildrens.org/our-services/centre-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr
Although there is no concrete research yet to say if therapies will or will not assist Reeve – the studies do show that being that he is an infant, Neuroplastisity is Reeve’s best hope. This is an empty part of the brain that can take over in very young children and perform some of the tasks the damaged brain can no longer do.
As any family would, the Rogers want to give Reeve the best possible treatment they can to try and assist with providing Reeve with some quality of life and the family with hope. Most importantly to give Reeve the best chance at reducing the symptoms of this life long debilitating condition.
I know there is A LOT of information in this story, but I wanted not only to explain this beautiful families horrible situation but also educate about Cerebral Palsy.
Bridget recently broke down to me and I will quote “I was lying in bed with Reeve this morning and he was smiling, for a moment I forgot about his diagnosis, but then I remembered, he may not be able to smile tomorrow” this broke my heart, as a mother I can’t imagine what this family is experiencing and yet to endure.
Just quickly, let me introduce myself, I am Amanda Summerfield and I live in Ormeau, on the Gold Coast, Australia. I became close friends with Bridget when our two boys started school together last year, a friendship I cherish. You know when you meet someone, and you just instantly bond - it's as if we have been friends for 20 years!
The family and I would like to THANK YOU for taking the time to read their story, and if you are able to donate anything to assist this family even in a small way – they would be forever grateful. This family does not ask for help, nor accept it easily, but this time they have no choice, they need help. As a close friend I had to do something to try and relieve the huge financial pressures they have ahead.
Any funds raised will be deposited directly into a seperate bank account in both Peter and Bridget's name to withdraw from once their Better Start Funding of $6k, has been used for the weekly therapy sessions which we estimate to be approximately 9 weeks! Reeve has already begun these sessions. In the future we are hoping Reeve will be accepted for treatment at the NAPA Centre in Sydney, and a candidate for the life changing operation in the US hence our goal target, the costs for both of these are not something the family can afford.
Watch this space for updates on how little Reeve is doing, he is a fighter we just need to help him fight.
Fundraising team (2)
Amanda Summerfield
Organizer
Ormeau QLD
Nicola Monks
Team member
This team raised $5,520 from 82 other donations.
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