Odie Wants to Walk
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.
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.
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 raised almost €25,000 so far (THANK YOU TO ALL OF OUR DONORS!) and hope to raise the remainder (€75,000) through our JustGiving account with the Tree of Hope charity.
Thanks for taking the time to visit Odie's JustGiving page. If you could help us by making a donation, we would be so grateful.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
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