Ethan's Wish to Walk
Ethan's wish to walk - fundraising to get Ethan walking with the therapy and surgery he needs to combat Cerebral Palsy.International
Ethan arrived into this world weighing 1.4kgs and was born at 29 weeks, nearly 3 months earlier than a normal full-term pregnancy.
When Ethan was born he stayed in hospital for a further 3 months as an incubator baby until he was full-term.
At 4 weeks old Ethan was diagnosed with Periventricular leukomalacia (PVL), which is a form of brain injury common with premature and/or very low birth-weight infants that generally develops into Cerebral Palsy.
Within 12 months of Ethan being born he was diagnosed with Spastic quadriplegia a form of Cerebral Palsy (CP) which affects both his arms and legs, making them very tight or in other terms creates spasticity. CP makes walking and the most simplest tasks really hard and painful.
Though Ethan has CP what he misses physically he makes up with his cheeky smile and fun loving character.
On a daily basis Ethan requires physiotherapy, hydrotherapy, speech therapy and conductive education. He also receives botox injections in his legs which temporarily reduces the stiffness to assist in building muscle through physiotherapy. Ethan is about to embark on his first major surgery to put his hip back in place which has come out of alignment due to spasticity caused by CP.
Cerebral Palsy cannot be cured, but a lot can be done to minimise its effects and help Ethan achieve the basics of life that we take for granted. After searching for other solutions online and talking to other families with children affected by CP we were made aware of a life changing surgery called Selective Dorsal Rhizotomy (SDR) which is not available in NZ, but instead is performed at St Louis Children’s Hospital in America.
Ethan can neither stand nor walk yet and struggles to sit independently. SDR is a surgery which reduces the tightness of muscles that will help Ethan to function in a more natural normal way. We are fundraising for him to have SDR surgery so that he has the opportunity to develop more normally and enjoy childhood in the same way that his sister does. SDR will also give Ethan the hope of walking.
Unfortunately, the surgery and physio is not funded here in NZ, so to make this a reality we are aiming to raise $150,000NZD. This will cover the surgery in St Louis and post-op rehabilitation with their team. It will contribute to flights and accommodation for the 6 week stay. As there is no post-op support for the surgery in our public health system, we also aim to use the funds to contribute to the rehabilitation costs required for Ethan to get the most out of the surgery on his return to New Zealand.
We are fundraising now as Ethan has been accepted for SDR surgery at St Louis Children’s Hospital. The best time for Ethan to have SDR Surgery is between 3 and 5 years old which is why we are raising funds now. We're hoping to raise $150k by the end of 2019.
We are going to get Ethan to St Louis and we ask you to help. Our goal is to get him walking independently or with a cane, but we can’t do it alone. Please support Ethan, every dollar that you donate gets him one step closer to his wish to walk. Any excess or unused funds will 100% be used for the additional ongoing therapy and care Ethan requires.
The Jones Family.
In addition to the SDR surgery, Ethan recently completed a 3 week intensive therapy session in Adelaide called Therasuit with great results and it’s recommended to achieve the best results he completes one of these 3 week session every 6 months. Each session including accommodation and flight costs approximately $15,000NZD. Therasuit also provides strength and endurance pre and post SDR Surgery.
For more information on SDR at St Louis Childrens hospital American visit: http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr
For more information on Therasuit in Adealaide Australia visit: http://therasuit.com.au/
Melissa Jones' involvement (page creator)
Donations will help Ethan with his opportunities to develop and hopefully one day walk independently.
Use of funds
To cover the surgery in St Louis & post-op rehabilitation. It will contribute to flights & accommodation for the 6 week stay & contribute to rehabilitation costs in NZ. Surplus funds will 100% be used for the additional ongoing therapy Ethan requires.
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You can see the pain he feels when he has to take a step.... that is the spasticity he feels everyday.
In a few weeks time he will have no more pain, no more spasticity. How amazing would that be on his body to not experience this every time he wants to move.
But this video once again just shows how determined he is to walk no matter how much pain he is in.💚💚
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This page was created on 4 Jan 2018 and closed on 1 Feb 2020.