Odette (Odie) is a cheeky, beautiful, bright 4 year old Irish girl with spastic diplegic cerebral palsy. The condition affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture, and balance.

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 normal daily activities. The spasticity, or tightness, in her legs can be very painful, and her family 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.

We wanted to share Odie’s story with our members and customers.  Not only to raise awareness but to also share with you the amazing strides she has taken since starting her very own swim journey with Gavin Doran, our Aura Drogheda Swim Coordinator.

Gavin has kept a journal, detailing his swim lessons with Odie.  Below are extracts from his journal.  We made the call not to change a word, from reading alone you can sense how far Odie has come.  We are so proud. 

Gavin’s Journal

Week 1 – August 22^nd

Odie came in and tentatively got into the pool.  We tried walking around and she could walk a bit but it was very uneven and wobbly.  I used my hands as support and she was putting a lot of pressure on them to keep herself upright.  She put her chin in the water and then blew bubbles.  She was able to lie forward and splash her legs a little behind her.

Week 2 – August 29^th

Odie put her whole face in the water today. She worked a bit on putting her bubbles together with her submersions.  We walked around again, more comfortably and confidently today.  She lay on her back with her head on my shoulder for support but only for a short time.  She much prefers going on her front.

Week 3 – September 5^th

Odie was in a really playful mood today especially compared to her withdrawn, reserved demeanour in the past week.  She floated on her own for the first time today.  She has taken massive leaps in term of confidence in the water in such a short space of time.  We also tried the main pool for a while where she actually floated on her own there as well.  She has made such incredible progress.

Week 4 – October 3^rd

Odie had really taken to floating on her front.  She is up to 5-7 seconds of floating and grabbing onto the wall to pull herself up.  She can walk with only 1 hand supporting her now and even that hand is doing very little.  She shows no fear in the main pool.  She loves to float around looking at the ground and more recently retrieved some toys and sinkers from the bottom of the pool.  Still not that fond of going on her back but is comfortable enough to try it with a woggle or on her own in both pools.

Week 5 – October 10^th

A real development and breakthrough TODAY! Odie stood up for 10 seconds on her own, completely independently! She was able to use her arms to help her balance.  This seems to have come about through her rapid development in her ability to float and glide on her front.  She now trusts herself to fall forward without panicking.  This could really lead somewhere!

Week 6 – October 17^th

WOW.  JUST WOW!  What an incredible day.  Odie took her FIRST STEPS on her OWN in the water.  I was so proud to see her walking on her own.  She took 2-3 steps and fell forward to me with a massive grin on her face.  It really feels like there is something very very special happening and I am so so delighted to be part of it.  This has the potential to really go somewhere not discounting the incredible achievement by Odie to date.

Week 7 – October 24^th

Odie continues to amaze be with her progress.  She is now starting to use her arms and legs to splash a bit while floating, going on her back with a woggle on her own, sitting on the ground in the main pool and jumping into the main pool and all of that in comparison to the fact that she took 8 STEPS on her OWN today!!! She is pausing and balancing before continuing.  I am beyond proud and amazed at this stage!

Odie’s family 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 is not performed in Ireland, and the HSE do not routinely fund this through the Hospital Treatment Abroad Scheme.

In order to give Odie the chance to travel to the USA, her family 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 the family and the aim is to fundraise through community events and through donations wherever possible.

Odie has a surgery date scheduled for June 2019.  Together let’s try to make a difference.

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 fundraising events including donations please visit the ‘Odie Wants to Walk‘ Facebook page!