Eatons Hill Family Going to America for Life Changing Surgery

Every so often at Village Buzz we come across a story that really tugs at our heartstrings and the case of young James Meyer from Eatons Hill is definitely one of those.

He suffers from cerebral palsy and his parents Darren and Christine have launched an appeal to raise funds to take him to the United States for selective dorsal rhizotomy (SDR) surgery. The surgery promises to remove spasticity in his muscles which will, in turn, relieve the pain and discomfort he endures. It will help him be more mobile and independent increasing his quality of life.

His birth in October 2013 (10 weeks premature) was traumatic and he was delivered by emergency Caesarean section. His twin sister Grace was born shortly afterwards and the medical team expected both children to recover fully in the course of time. By the age of 10 months, however, it became apparent that James wasn't hitting the same developmental milestones as his sister and was diagnosed with cerebral palsy. This affects all sufferers differently and, in James's case, his cognitive function was luckily not impaired but he was in a state where the muscles in all four limbs are impacted by spasticity making his muscles tight and hard to move.

The condition is painful and threatened to reduce his mobility to the extent he might never be able to walk independently. The medical team launched an early intervention programme of treatment which included physiotherapy, hydrotherapy and speech therapy in an attempt to alleviate his symptoms.

He was classified as a 4 on the GMFCS scale which ranges from 1 to 5, with five being the most disabled. Doctors expected James would spend a lot of his life in a wheelchair but his mum Christine said he was so determined to walk that he is now able to use a hand-held walker and has been downgraded to a 3 on the GMFCS scale.

Determination, regular Botox injections and a self-funded programme of intensive therapy were responsible for this improvement. However, Christine told Village Buzz that these treatments are not long-term solutions because the effects of Botox only last a few months and intensive therapy costs between $3000-$5000 which is prohibitively expensive because it would have to be repeated three or four times every year.

The family began to hope again early in 2017 when Christine heard about SDR surgery from a mum whose child had successfully undergone the treatment and she and Darren began to investigate the possibility that it might benefit James too.

He was found to be a promising candidate but the surgery is not often performed in Australia meaning the family will have to travel to the St Louis Children's Hospital in the US where he can be operated on by leading specialist Dr Tae Sung Park.

The cost of travel, the surgery and intensive rehabilitation afterwards will cost $100,000 and so James's parents launched the Every Step Foundation to try to raise the necessary funds to relieve the pain their son suffers from and give him the best chance they can of living a normal life.

Christine explained that the SDR surgery will involve identifying the nerves rootlets leading out of James’s spine responsible for his muscle spasticity and cutting them. There will be plenty of physical therapy for him to undergo afterwards but his parents believe it will be worth it for the reduction in pain and discomfort and increased mobility it will bring.

Mum Christine believes the treatment will be successful and points out that the surgery has been performed thousands of times with many testifying to the positive effect it has had on their lives. James’ medical team are supportive of his parents’ decision to seek the treatment.

Without help from the community, however, it will be financially impossible for him to receive the treatment. The Every Step Foundation welcomes one-off or monthly donations at the link provided and will be holding events over the next few months to raise funds.

Donations are tax deductible. To donate, visit https://www.givenow.com.au/jamessdr

Ladies are invited for a fundraising lunch at Hillstone St Lucia in October. It will be a day of fun to support James on his journey to an independent and pain-free future. Follow Every Step Foundation on Facebook for updates on events and to see James’ progress.

We at Village Buzz wish the Meyer family every success with their fundraising efforts and will be holding thumbs for James when he goes through his life-changing surgery later in the year.

Every Step Foundation

Facebook: https://goo.gl/Hchq1Y

Website: http://www.everystepfoundation.org.au/

Donate: https://www.givenow.com.au/jamessdr

More information on SDR surgery

Website: http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr

Brochure: http://www.stlouischildrens.org/sites/default/files/services/cerebral_spasticity/files/SDRbrochure_final.pdf

 

Fundraising Ladies Lunch

Date: 21 October 2017 at 11:00am

Location: Hillstone St Lucia, Carawa Street, St Lucia, QLD 4067.

Contact: Christine Meyer, 0422740304, info@everystepfoundation.org.au

Booking: https://www.trybooking.com/RKNH

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