Odie Wants to Walk
Donation protected
**UPDATE 10/09/2020**
Hello to all of Odie’s supporters!
We have not updated our page in a while, so we wanted to let you all know that Odie is doing really well.
It has been 11 months since Odie had both SDR and PERCS orthopaedic surgery in St. Louis. She did intensive physio courses in January and February 2020 and managed to take her first independent steps! It was an indescribable feeling to see her reach that milestone. Odie has transitioned to mainly walking with canes at home. Most importantly, she has more confidence in herself, and zero pain!
Unfortunately due to COVID-19 and lockdown, we were unable to access regular therapy, but Odie is now back swimming and horse riding. We hope that she will be able to access the intensive physio she needs in the crucial time post surgery as services begin to open up again.
Odie is such a determined little woman, and she wants to make everyone proud by walking. There is a long road of therapy ahead but thanks to you all, she is on her way!
Thank you, from David, Joan and Odie x
If you would like to make a donation towards Odie's ongoing therapy costs, we would be so grateful.
For more Odie updates, please see www.facebook.com/odiewantstowalk
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Meet Odie!
Odette (Odie) is a cheeky, beautiful, bright 5 year old Irish girl with spastic diplegic cerebral palsy.
Cerebral palsy is an umbrella term that refers to a group of disorders affecting a person’s ability to move. This condition affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture, and balance. Although cerebral palsy is a permanent life-long condition, some of these signs of cerebral palsy can improve or worsen over time.
Odie's cerebral palsy is caused by a condition called periventricular leukomalacia, or an injury to the white matter of the brain, and this is linked to a heart condition that she was born with known as tricuspid valve dysplasia.
Odie is unable to walk without the assistance of her walker and cannot stand unsupported. At home she crawls on the floor or is carried. Her balance is poor and she needs assistance with all of the normal daily activities; getting to the toilet, moving around, playing, and dressing herself. The spasticity, or tightness, in her legs can be very painful, and we do daily physiotherapy and stretching to try and reduce this. Odie also needs to wear leg splints to try and keep her muscles stretched into normal positions during the day.
In time, the spasticity, or tightness in Odie's legs will increase, which means that her pain may also increase. There is also the possibility that she may lose the ability to use her walker and will need a wheelchair.
However, we have been given hope by world-renowned neurosurgeon Dr. T.S. Park of St. Louis Children's Hospital in Missouri, USA. Dr. Park has evaluated Odie and considers her to be a candidate for selective dorsal rhizotomy (SDR) surgery. This amazing, life-changing surgery involves the cutting of nerves in the spine which connect the brain to the muscles in the legs in order to permanently reduce the tightness and pain, and allow for walking. It is not performed in Ireland, and the HSE do not routinely fund this through the Hospital Treatment Abroad scheme.
Dr. Park and his team believe that SDR will permanently reduce Odie's spasticity, improve her balance and level of comfort, and give her the potential to achieve independent walking. She may also require orthopaedic surgery at the same time to achieve the best results, and will need long-term intensive physiotherapy when she comes home to maintain the benefits.
In order to give Odie this chance, we are attempting to raise €100 000 to cover the cost of the operation, therapy requirements, follow up treatments and travel to and from the US. This is obviously a huge challenge for us and we hope to fundraise through community events and through donations wherever possible.
We have a surgery date scheduled for June 2019. We feel that SDR will give Odie the best chance to walk, run, dance and play, and give her the independence she would love to have.
If you could help us by making a donation, we would be so grateful.
For more information on SDR and Dr. Park: http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/patient-selection
To see campaign updates and news about our fundraising events please visit our Facebook page: http://www.facebook.com/odiewantstowalk
Hello to all of Odie’s supporters!
We have not updated our page in a while, so we wanted to let you all know that Odie is doing really well.
It has been 11 months since Odie had both SDR and PERCS orthopaedic surgery in St. Louis. She did intensive physio courses in January and February 2020 and managed to take her first independent steps! It was an indescribable feeling to see her reach that milestone. Odie has transitioned to mainly walking with canes at home. Most importantly, she has more confidence in herself, and zero pain!
Unfortunately due to COVID-19 and lockdown, we were unable to access regular therapy, but Odie is now back swimming and horse riding. We hope that she will be able to access the intensive physio she needs in the crucial time post surgery as services begin to open up again.
Odie is such a determined little woman, and she wants to make everyone proud by walking. There is a long road of therapy ahead but thanks to you all, she is on her way!
Thank you, from David, Joan and Odie x
If you would like to make a donation towards Odie's ongoing therapy costs, we would be so grateful.
For more Odie updates, please see www.facebook.com/odiewantstowalk
*************************************************************************************************************
Meet Odie!
Odette (Odie) is a cheeky, beautiful, bright 5 year old Irish girl with spastic diplegic cerebral palsy.
Cerebral palsy is an umbrella term that refers to a group of disorders affecting a person’s ability to move. This condition affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture, and balance. Although cerebral palsy is a permanent life-long condition, some of these signs of cerebral palsy can improve or worsen over time.
Odie's cerebral palsy is caused by a condition called periventricular leukomalacia, or an injury to the white matter of the brain, and this is linked to a heart condition that she was born with known as tricuspid valve dysplasia.
Odie is unable to walk without the assistance of her walker and cannot stand unsupported. At home she crawls on the floor or is carried. Her balance is poor and she needs assistance with all of the normal daily activities; getting to the toilet, moving around, playing, and dressing herself. The spasticity, or tightness, in her legs can be very painful, and we do daily physiotherapy and stretching to try and reduce this. Odie also needs to wear leg splints to try and keep her muscles stretched into normal positions during the day.
In time, the spasticity, or tightness in Odie's legs will increase, which means that her pain may also increase. There is also the possibility that she may lose the ability to use her walker and will need a wheelchair.
However, we have been given hope by world-renowned neurosurgeon Dr. T.S. Park of St. Louis Children's Hospital in Missouri, USA. Dr. Park has evaluated Odie and considers her to be a candidate for selective dorsal rhizotomy (SDR) surgery. This amazing, life-changing surgery involves the cutting of nerves in the spine which connect the brain to the muscles in the legs in order to permanently reduce the tightness and pain, and allow for walking. It is not performed in Ireland, and the HSE do not routinely fund this through the Hospital Treatment Abroad scheme.
Dr. Park and his team believe that SDR will permanently reduce Odie's spasticity, improve her balance and level of comfort, and give her the potential to achieve independent walking. She may also require orthopaedic surgery at the same time to achieve the best results, and will need long-term intensive physiotherapy when she comes home to maintain the benefits.
In order to give Odie this chance, we are attempting to raise €100 000 to cover the cost of the operation, therapy requirements, follow up treatments and travel to and from the US. This is obviously a huge challenge for us and we hope to fundraise through community events and through donations wherever possible.
We have a surgery date scheduled for June 2019. We feel that SDR will give Odie the best chance to walk, run, dance and play, and give her the independence she would love to have.
If you could help us by making a donation, we would be so grateful.
For more information on SDR and Dr. Park: http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/patient-selection
To see campaign updates and news about our fundraising events please visit our Facebook page: http://www.facebook.com/odiewantstowalk
Organizer and beneficiary
Joan Devin O'Brien
Organizer
Joan Devin
Beneficiary
